Saturday, December 29, 2012

My Heart

Here it is- the quarterly post.  I am so sad that I don't have the time to blog anymore that I used to.  It was such a place of therapy and refuge for me.  First off, we had a great Christmas!  We actually celebrated on Christmas Eve since Kenneth was on duty Christmas Day.  It's great to have that connection with Santa that you can get hi to come a day early.  Carly's big gift was a new puppy.  Since we had to put one of our dogs, Max, to sleep a few months back because of heart worms and renal failure we had promised the kids we would get another dog.  Carly never let us forget it.  We finally decided it would be OK to get another one and so Santa delivered the cutest little Italian Greyhound.  Carly named him Season and he is fitting in great with the entire family.  I even saw our other dog, Rocko, play today with him like I haven't seen him do since Max died.  That did my heart good!  Santa brought Anna a kitchen and Gabe got a workbench with tools.  Of course they got lots of other stuff from us, too.
Pardon the psycho eye glow of Season 

Homeschooling is still going well with Carly.  We do have our struggles but we work through them and all in all I still believe it was the right thing to do.  We added more dance classes to her weekly schedule so that she gets more time with her friends and other kids her age.  Gabe continues to do well also.  He can say anything he wants to but always tries first to grunt and point.  He lives for Barney and Bubble Guppies.  I cannot believe he will be 2 at the end of February.  He is still sleeping in his crib even though he did climb out once.  He hasn't tried to climb out again so I guess for now we are safe.  

And now to the meat of this post- I am going to share some tings that are on my heart that I have debated about whether or not to share but in the end I think it is important to get it off my chest and to maybe help others not feel so alone.  First off, Anna's medical expenses are eating us alive.  Our insurance still refuses to cover the tube feeding formula although they paid to put the tube in and pay for the pump and feeding bags.  It costs $650 per month to feed her the formula.  Since starting it a few months back she has gained over 5 pounds.  That is huge.  We cannot afford to keep feeding her, but we cannot afford to stop either.  When I call Medicaid or SS  they laugh and basically tell us to either divorce or quit our jobs- otherwise we will never qualify.  Anna is also needing some therapy which we cannot  afford at $50 a visit (our copay).  We made a promise to God to stick together for better or for worse and we will do that.  We will not allow a financial situation to dictate our marital status.  Thank God we have never fought about money because if we were the type that did we would be sunk!  Quitting our jobs is not in the cards either.  We both enjoy our jobs and look forward to the time away from home and stress of home.  Don't get me wrong- work is stressful too though.  My manager recently left our facility so I am now the interim ICU manager as well as still covering my previous ICU supervisor duties.  It was a lot for 2 people to handle and now it is just all me.  My boss was going to really be a huge support to me and then suddenly she was diagnosed with a very aggressive breast cancer and she will be gone for quite awhile also.  So I am feeling a heavy weight to carry at work but I know that God will provide me the strength and wisdom to get through it.  The ICU staff is so supportive of me and back me 100% which is so helpful.  Anyway, so back to the money situation.  I got in touch with an old high school friend who has a special needs child also.  Back up- we are on the medicaid waiver wait list which is about 8 years long.  My friend told me about a way to get to the top of the list with amazing speed- like a couple of months rather than 8 years.  It is called a Rider 28 for the MDCP in Texas.  This will require a 1 night stay in a nursing home for Anna (with me by her side of course) but it will be so worth it.  It will get us immediate Medicaid which is what we need to continue to tube feed her and to get her into therapy.  They will also provide respite services so that Kenneth and I might get some sleep at night.  Anna is back to waking up at 3am and staying up for hours and it is taking its toll.  I will try my best to update as I find out more about this program and exactly how it works.  I am an educated woman who works in the health care system and I had no idea this program existed so I am certain there are others in the same boat.  Enough about the money- now for the emotions.  I was looking for a paper the other day and came across Carly's old work from Pre-k.  As I looked at the dates I realized this work was done when Carly was about 4.5 yrs old.  She knew her letters, she knew her numbers, colors, shapes, etc.  She could write her name first and last and the list goes on.  I know that parents are not supposed to compare their kids but I did.  Anna is 5.  Anna knows the letter A.  Anna knows 2 shapes.  Anna knows a couple of colors sometimes.  Anna does not know any numbers and cannot count to 5.  And that is when it happened.  I had a total OMG moment when I realized just how far behind Anna is.  Carly was not really advanced at that time- she was right on target so it is not like I am comparing to a genius.  I have just grown so used to Anna that I don't really realize sometimes were we really are with her.  She is making progress.  She is using the toilet about 10% of the time which is HUGE.  But still, I had to take a hard look at things and then I started to worry...about everything.  Will she ever learn her letters?  Her numbers?  How to read?  Potty train?  To drive?  To live independently?  To have a job?  My heart is so heavy!  I want to just rejoice and be happy that she is happy in life but I also know deep down that happiness will not get you through life.  And I worry that I am not doing enough to help her.  And I worry about if I should be starting a trust for her in case she always requires care and when we can't afford her care now where would the money to start a trust come from?  I know God has this all under control.  I know this logically.  But my heart is heavy and painful.  I do believe God will take care of things no matter what but I also believe I have to do my part but I don't even know what my part is or what it should be.  And so here I am.  Have you been here?

Tuesday, December 25, 2012

Merry Christmas

Merry Christmas from the 3 sweetest monkeys I know.

Sunday, November 4, 2012

Becoming "Those" People

Homeschoolers?  Us?  No freaking way!  I had thought about homeschoolers from time to time.  My thoughts mostly centered around how weird they must be and how homely their children would grow up to be.  Kenneth and I had even discussed it on occasion but we knew it wasn't for us.  We weren't "those" kind of people.  Sometime about 2 weeks ago something inside of me snapped and suddenly I realized we were those kind of people.  And that is where our adventures in homeschooling began.

Let me go back a few months.  Although Carly is an AB student she struggles.  She has dyslexia and she has ADHD.  I'm not a huge fan of the whole ADHD diagnosis but if you know her then you know it fits like a glove.  The school Carly was at had a wonderful dyslexia program.  The dyslexia specialist was hands down my favorite teacher Carly ever had.  She worked with her and as she worked with her I saw great strides in Carly's reading and comprehension skills.  It was amazing.  The problem was that she was only with that teacher for 1 hour 4 days a week.  The rest of the time she was with teachers who could not seem to understand that it just takes her a little longer to finish things and that putting pressure on her to finish in a certain amount of time only makes things worse.  They were not bad teachers at all, I just think they were not a good match for Carly.  There were plenty of other kids who seemed to be excelling in there so I know they are not doing a bad job.  Anyway, most of this year Carly has come home from school crying or in a bad mood and constantly talking about how bad her days were at school.  She had plenty of friends, she wasn't being bullied or anything like that.  She was just struggling to bridge the gap between her IQ and her skills.  She scores off the chart on IQ but she struggles with day to day tasks at school and the struggle was really taking its toll on her.  Then there was the battle with Anna.  I was constatnly getting calls about her absences.  These were absences for things like EEGs and Gtube placement.  We never kept her home just for the heck of it but even if we did it is Pre-K for heaven sakes.  They wanted a note from the hosoital to prove she had really been there because apparently the gtube was not enough proof.  I suppose they thought we purchased a home installation kit.  I know, its school policy and state law, but it is still absurd.  The problem really is that this is our reality.  Anna will always have Dr appoontmnts and hospital stays and she will always be missing school.  So these things just kept building and building until poof- we had enough.

So I started researching and found on online cirriculum that does not require too much parent instruction.  After all, I still have to work 5 days a week and Kenneth still works too.  Those I know who already homeschool were very encouraging.  Those who don't homeschool were supportive but I could read the undertone of "you have lost your freaking mind."  

Here we are, a week down, and I will tell you what I have learned:
  1. Public school wastes an amazing amount of time.  It's not really their fault, it is just the way it is designed and they have so many kids there that it just happens.
  2. Carly is a completely differnt child now.  She said she is fianllly able to relax because nobody is rushing her.
  3. Carly's whole attitude has changed.  She has been in trouble with us maybe twice this week as complared to her normal 20 times.
  4. Carly is completely off of her ADHD meds- meds which the school thought she needed more of.
  5. I see Carly acting more like an 8 year old than a 12 year old in regards to attitude.  I feel like the pressures at school are pushing our kids to grow up way to fast!  She is no longer hiding and lying about things she likes to do or cartoons she still likes to watch our of fear of what schoolmates would think or say.
  6. I am learning to enjoy my kids more because we are not always rushing to get homework done or get here or get there...
  7. I am learning that every thing in life is a school lesson.  You can teach your kids so much by using everyday experiences.
We are still tweaking our schedule to see exactly what works best.  It changed a lot just through the first week but so far it looks like we will use computer curriculum for math and language arts.  We are using a system called Time 4 Learning.  It is great for ADHD and dyslexic kids.  Those will be done on Monday and Tuesday.  Wednesday is history day and for that we are using the American Girl Doll Series.  They are fictional characters but historically accurate and Carly loves them so she is very engaged in them.  Thursday is science day and we are just going to pick things that are interesting or relevant to things going on in the news and I will develop units about them.  This week we did a unit on hurricanes.  I was fearful that she would not absorb the information but let me just say she was able to tell me so much more about what she had learned this week than ever before which she attributes to learning without distractions.

Anna is doing well too.  She also has the computer curriculum but we are doing more focus with her on letters and numbers.  She does daily worksheets and also works on skills like cutting and coloring.  She looks forward to doing her "work" everyday and was actually disappointed that I didn't have anything planned for the weekend.  When she had a GI appointment last week it was nice to take the kids and not worry about what the school would say about it.  As a side note, Anna has gained 1.5 lbs since the gbutton was placed.  That is huge!

I know this is all still new but I really feel like this is such a good fit for us.  We still have plenty of structure here but it is relaxed structure if that makes any sense.  We had committed to doing this for the rest of this school year and then we would reevaluate.  Carly told me the other day she is pretty sure she would like to homeschool next year too.  There is so much more I could go on about but that will be for the next post.

Sunday, October 21, 2012

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!

Thursday, September 27, 2012

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:

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.)

Thursday, September 6, 2012

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. 

Sunday, August 26, 2012

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.

Thursday, August 9, 2012

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!

Thursday, July 5, 2012

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.

Sunday, June 24, 2012

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.

Thursday, May 31, 2012

Consider The Bird

There has been a lot of stuff that has happened the past few weeks.  There are good things and I am really trying to focus on them although it is hard.  Carly won the Wildcat Pride All Year award at school.  She also participated in the school talent show with her friend Taylor.  Given her anxiety issues that was nothing short of miraculous.  They did great and when I am home I will have to post the video.  The girls wrote and sang their own song.  They won 2nd place in the people's choice part of the talent show.  I am so proud of all she is doing!  That is the positive- now for the rest.  My surgery went well but was way more painful then I could have expected.  I had thought I would just be up and going in no time but I was so wrong.  I am now 2 weeks out and doing well.  I still have a little pain but it is tolerable.  I do not think all of the added stress is helping me to heal.  I still can't take a bath (don't worry, I do shower) and I still can't lift much.  The not lifting has been hard because of Gabe.  We had to put one of our dogs to sleep last week too.  Just another added bonus to the crapstorm.  He had been rapidly losing weight over a couple of weeks and we took him to the vet and he was in complete kidney failure.  He also had heartworms but they would have been treatable had the kidneys been ok.  We miss him but know he is better off.  Then there is Anna.  God bless her little soul.  Sunday morning she just wasn't being herself and would not eat.  She began to run fever and vomit.  She ran fever all night of 103-104 that would not come down with Tylenol and Motrin.  I fed her Gatorade through a syringe all night just to try to keep her hydrated.  The next morning her fever was pretty much gone but she was still vomiting and refusing to take her meds so I took her to the ER where I work.  They were able to get her meds down her and decided it was just a virus.  She did not vomit at the ER all day but as soon as we got home she started vomiting again.  I was up most of the night with her again- not from vimiting but because she was acting delirious.  I was hoping the worst was over and then she woke up vomiting again.  I decided that this was not a virus and so off we went to see our pediatrician, Dr. Goff.  He was concerned and felt she needed a work up and sent us to the Cook's ER.  We got here and Anna was, surprise, dehydrated.  By the time we arrived it had been over 24 hours since she had urinated.  They started her IV and after 1.5 liters of fluid she finally started urinating.  They then gave her a Gatorade which she drank and did well with.  We finally got out of the ER and to her hospital room that night and she ate a little jello and took her meds and then proceeded to throw all of that up.  After that they said she could not have anything else by mouth except her medicine.  All day yesterday she just got IV fluids and then today she was given a clear liquid diet.  She drank a sip or 2 of juice but refuses to eat anything because she does not want to "puke up."  OK- so none of this sounds too bad, right?  We are on day 5 now with no answers.  I am certain this is gastroparesis (delayed gastric emptying) which we have dealt with in the past.  The cure for her is pretty easy- pyloric balloon dilation done via EGD.  The problem- Anna's regular GI doctor is not on this week and we are having to deal with this Dr who I cannot stand.  She spent all of 20 seconds with us yesterday and decided her big and brilliant plan was to do NOTHING.  She said we need to give Anna gut rest.  Um hello lady, what the hell do you think we have been doing?  She is insisting that this is just a virus that needs to run its course but then in the next breath she talks about gastroparesis brought on by a virus.  She is refusing to do an EGD (scope) until at least tomorrow if even then.  She was the coldest Dr. I have ever met who was completely dismissive of any and everything I had to say.  I talked to the nurse yesterday about my dislike for her and was told that there wasn't really another choice right now.  I grew more and more frustrated.  This morning the nurse practitioner came by and I pretty much had a crying melt down.  I am so tired of them chasing rabbit trails when I know what is wrong and what needs to be done.  They want to wait and see if she throws up today and then do this test and that test and see if she has gastroparesis.  Surprise idiots, we already have established that diagnosis.  This is not a virus.  It may have started that way but it is not that anymore and hasn't been since the first day.  When I said to the Dr that this is exactly how she was before when she had gastroparesis she looked at me and said, "I'll take that into consideration."  I felt like giving her the bird and telling her to take that into consideration.  In the mean time my child is miserable and I am growing more and more frustrated and angry and nothing is being done.  Anna is hydrated but otherwise no different than she was when we started.   The nurses are in agreement with me and are trying to help us today in all ways that they can.  They sent the patient rep into talk to me and I had another melt down.  They are trying to get Anna's regular doctor to swing by and see us today.  I know I am not doing a good job of explaining things on here but there is just too much to tell and the bottom line is that I can't stand doctors who do not listen to a parents.  Then they had the nerve to say to me, "well, we don't want to have to do anything unnecessary to her."  That really pissed me off- as if I do want to do unnecessary things.   I don't want unnecessary things, I just want my kid to get better and sitting here doing nothing is not accomplishing that.  The hospital staff has been great but that Dr. has got to go.  She needs to retire!  Well, I need to get off of here.  Please keep Anna in your prayers and also pray that Dr. Ogunmola will come see us so that we no longer have to deal with Dr. Hunt. 

Wednesday, May 16, 2012

Sucker Punch: The Sequel

I got a call from the PhD today who did Anna's neuropsych testing.  She went over the report with me for about 30 minutes.  I might have heard 1/10 of what she said.  Luckily, I will get an official copy of the report and recommendations in the mail.  If we had to depend on my memory at this point we would be screwed.  She has what is called Cognitive Disorder NOS (not otherwise specified) which includes deficits in expressive language, receptive language, visual motor, visual spatial, fine motor, short term memory, working memory, and executive functioning.  I was doing OK through all of that.  Then she got to the next part- borderline intellectual functioning.  That is just about where my mind and body went numb and I didn't really hear much else except about setting up a trust fund for when she gets older.  My heart is officially broken.  Don't get me wrong, it doesn't change anything about the way I feel about Anna or the love I have for Anna.  Anna is still the most amazing little spit fire I have ever met.  It just hurt like hell to hear that and to really think about the struggles she will face.  My friend Nikkole said it best- I can talk about my child's delays and problems all day long on and in MY terms and it is OK.  It is the terms of others that tears me up.  The PhD did say some positive things about her fluid reasoning skills and that can be an indicator of good things to come.  The report also comes with a long list of recommendations for us and for the school.  Could I tell you what any of them are?  Nope, not right now.  I tried to talk to Kenneth about it but that was pretty much a dead end.  I am not trashing him, I'm just being really honest.  He refuses to show any emotion about Anna's problems.  I have said before that is a good thing and sometimes it is.  But I think every now and then it would be nice to know that he has some emotion about it instead of just acting like everything is fine.  Everything is not fine and quite frankly I'm getting really tired and weary from feeling like I'm carrying this all by myself. 

Before that disturbing phone call I had a meeting with the dyslexia specialist at Carly's school.  They got all of her testing done and surprise- she has dyslexia.  We had been told before she had it but they couldn't officially test until the end of 2nd grade.  She will be with the specialist for 50 minutes 4 days a week starting next school year.  I have already seen great strides since January when she started working with the specialist and I am so glad she will be getting the help she needs.  The funny part?  Her IQ score was very high and therefore she qualifies for the gifted and talented program.  Yep- special ed and gifted and talented program all in one child.  I am so proud of her and the great gains she has made this school year!

I went to the Dr this afternoon for some problems I've been having and found out I will be having a hysterectomy tomorrow morning.  It has been a whirlwind kind of day.  I am exhausted- emotionally and physically.  Add to that that my husband has strep throat (the man version which is WAY worse than any woman version could ever be) and so he has been a real ball of joy.  I love him dearly but really, this whole whining pathetic thing has got to stop.

These are only a few of the highlights from this most splendid day!  So please, if you have any spare prayers this girl could really use them because I feel like I'm about to break!

Monday, May 14, 2012

Help Me Help Others

Support me in the Promise Walk for Preeclampsia

As you have probably figured out if you have read any of this blog, our lives were turned upside down by preeclampsia.  Please help us to reach our team goal of $350 by this coming Sunday, May 20th.  The money goes to support the Preeclampsia Foundation which provides support, resources, and research about preeclampsia and other hypertensive disorders of pregnancy.  I would love to know that sometime in the future other families will not have to worry about the effects of this disease.

Sunday, May 6, 2012

Teary Eyed But Still In Love

I did it and I survived it, barely.  I made it to the dreaded and feared ARD (or IEP as it is called in some states) meeting for Anna.  I am OK with the IEP itself but still sickened by the results of the testing they did.  I had heard some of it over the phone but got the official report in writing and it just brings me down.  Way down!  It just never gets easier to hear things.  Our neurologist had warned us some time ago that as Anna got older the gap would widen and we would really begin to see where her problems and delays were.  I think I've talked about that before in some other post.  As kids are expected to do more there is also room for them to not do more.  My eyes welled up with tears during the meeting as I sat there and heard "Cognition- delayed, Motor Development- delayed, Language- delayed, Social Skills- delayed, Self-care- delayed...indicating poor functioning relative to individuals of the same age."  They scored her overall between the 7-8%.  She had private neuropsych testing done last week and we should have those results in 2-3 weeks.  I will be interested to see if they are about the same.  The school's current plan is to mainstream her in pre-k next school year and provide support as needed.  They will kind of wait and see how she does in the classroom and then add the services as the teacher identifies more problem areas.  They will have speech and OT come and see her at least weekly and make classroom adaptations as needed.  I am OK with this.  I think as she gets with other kids she is either going to take off and make great progress and won't need a ton of services or she will really struggle and we will easily identify what she needs.  She is qualified for services so adding them will not be a huge deal.  So I've really been struggling with those results and have felt really down again and kind of angry, too.  I really thought I was past the anger and had achieved true forgiveness but I guess it is quite apparent that I am human and I am struggling again.  Kenneth is such a man.  He looks at the results and says,"Well, we can only go up from here."  That was it.  I love him so much and am actually thankful that he doesn't get emotional because 1 of us needs to stay sane.  He is just very matter of fact about everything with Anna.  I could go on forever about the anger that has been stirred back up but it just stems from knowing things didn't have to be this way but I know that's a whole other post.

 Kenneth and I celebrated our 10 year wedding anniversary on Friday.  We didn't do anything special which actually made it really special.  We just stayed home, played with the kids, enjoyed a great dinner, watched a beautiful storm, and watched Carly make shadow puppets on the wall as the electricity flickered off and on.  Just being home and really enjoying each other's company was all I wanted.  We weren't rushed or preoccupied.  We were just enjoying the fruits that 10 years of marriage have given us and that to me is quite special!

Here's one from our early days

Wednesday, April 25, 2012

Unfair To Compare

As we sat eating tacos and refried beans for dinner (one of only a handful of meals that everyone in this house will eat) I placed a spoonful of beans on Gabe's high chair tray.  He went to town eating them with his hands and doing a mighty fine job at it.  Then I decided to give him a spoon and see how it went.  He quickly scooped up some beans and got them straight to his mouth.  Very little mess (until later when he "washed" his hair with them) and he was so proud.  And so was I.  Then I looked over and saw Anna- struggling to eat her food and spilling beans and meat all over the place.  It looked like a taco bomb had exploded in her place at the table and on the ground around her.  I sat and thought for awhile and my first thought was how sad it made me that Gabe is 1 and can easily use a spoon to feed himself and how at 4 Anna really still struggles with a spoon.  I started to get really sad.  Then I had a moment of perspective.  2 years ago Anna was not only not using a spoon, she was not really eating by mouth.  The bulk of her nutrition was from her Gtube.  It hit me like a ton of bricks-  it's not sad that she can't use a spoon well, it's a miracle that she can use it at all.  So I decided I have 3 choices:
  1. Remain sad that Anna struggles
  2. Be proud of Gabe's accomplishment
  3. Be proud of Gabe's and Anna's accomplishments.
Number 3 is where it is.  I must not compare.  It is not fair to either child.  Each child is a miracle of their own.  I struggle with this so much- comparing them, all 3 of them.  I must remember that even if they were all born perfectly healthy they would still do things on their own timeline.  Each one is a miracle!

Tuesday, April 24, 2012

A Sigh Of Relief

I guess I totally forgot to update about Anna's appointment and the pre-k development. Seeing Dr. Hernandez always makes me feel better. No matter how stressed I am he is able to put things into perspective and remind me how far Anna has come from where she began. He said that although Neurontin is not his first or even second choice of a drug for seizure control but since she was already taking it he thought it would be better to manipulate it first before trying anything else. If that did not work then we would abandon it and add a different medication. If that didn't work we would begin to discuss more drastic steps like neurosurgery. Luckily the medication increase is working for the time being. It took about 3 days and then Anna's personality seemed to return to what it was before the last seizure storm started. She is back to laughing and giggling and just overall being the silly girl we are used to. That whining, crying, sleepy kid went away and I am so thankful. She was about to push me over the edge and I know she felt bad too. I saw a sign at the school about the "Pre-K Round-Up" so I called to get the details. It turns out we will have to pay $100/month (which is WAY CHEAP) for Anna to go to Pre-K in our district. It is a 1/2 day Monday-Friday program. There will be space for her and I am so glad. I was able to mark that off of my list of worries also. I'm thinking the afternoon program will be best for her because her tegretol knocks her out in the morning. I know that when she starts full day school this will not be an option but I'll take it while I can. So yay for good news!!

Friday, April 20, 2012

Serious Business

I must admit that prior to having a kid with a peanut allergy I did not realize the seriousness of it.  I know there must be other people out there that feel the same way.  Today, someone ate a peanut butter cookie and then picked up Gabe without washing their hands first.  These pictures were taken 4 hours after the exposure and also after doses benadryl and zyrtec.  Keep in mind he did not ingest it but was merely touched by someone who had touched peanut butter.

He had these hives everywhere he had been touched.  I could only keep him still long enough to get these couple of pictures.  Now just imagine if he had ingested it and that happened on the inside.  Take it from me folks, peanut allergies are serious business!

Tuesday, April 17, 2012

The Sucker Punch

Some of my favorites from Easter

As always, I have intended to sit down and write each night for the past week or 2 but it just doesn't happen. I so want to but my body is tired and when the kids go to sleep I soon follow. There has been so much going with Anna, or what feels like so much, that I'm not really even sure what is bothering me the most. A couple of weeks ago Kenneth forgot a few different times to give Anna her morning dose of tegretol. Although I hold him ultimately responsible, I also know that Anna is becoming more and more resistant to taking her medicine and that does not make things any easier. We used to be able to say in the morning, "Anna, go take your medicine" (we always set it out in a medicine cup the night before) and she would just do it. No questions and no hesitation, she just did it. Now, you have to really stay on her. She will tell you she took it when she didn't or she will fuss and cry and tell you how much she doesn't want to take it. It is not easy being home with the kids and I know Kenneth is doing the best he can. I am so lucky and blessed to have him as a husband and the kids to have him as a father. I know we all make mistakes- I just wish this one would not have involved Anna's seizure medicine. I assume after missing a few doses that her tegretol level came down and we lost the seizure control we have had for 6 or more months. Although it troubled me and I felt sorry for her I just knew that as soon as her level stabilized we would be good to go again. In the mean time it was not fun. She was just not herself and you could tell she knew it too. It was heartbreaking. After 3 or 4 days went by like this and things were not getting better (including a seizure during her soccer game) I decided it was time to do something different because we were not getting the control back that I thought we should. She had a tegretol level drawn and the neuro's office called me today and they cannot increase her tegretol anymore so they are now going up on her neurontin. She will no doubt be a zombie for days now. I guess if it gains us control it will be worth it. I just feel bad for her. Then the special ed people with the school district called yesterday and Anna has, based on their testing (which correlated perfectly with the questions I answered- my score was the same as theirs), been officially tagged with the label "cognitively delayed." That was like a sucker punch to the gut. For some reason I've learned to be OK with speech delay or memory deficit but adding all of that up to cognitive delay is so much harder to swallow. I have been nothing but nauseated since hearing that. I know it is just a label and it does not change Anna but it still hurts. It hurts a lot. On a positive note though, it does open up many more options for us to get her the help in school that she will need so hopefully soon I will be able to let the hurt and sadness go and focus on the good this will bring. We have 3 different options we are looking at for pre-k for next year. The first is to send her to public pre-k. This is the best option except it is a need based program and again, we make too much money. If there are any slots left after the need based kids then maybe she will get a place there and she will receive services there. Our next option is private pre-k ($$$$) and they will come there and provide services. A good option, but expensive. Our third option is to send her to PPCD (pre-k program for disabled children) 3 days a week. I was assured she would be too high level for that program and now they say she qualifies (another one two punch). The whole medicaid buy in thing that I thought was going to be the answer to some of our medical money woes has turned out to be a total pain in the rear and maybe not even worth trying to get. It is not as simple as they make it sound and certainly not as beneficial as they make it sound. So for now we will continue on a payment plan with Cook Children's to pay out the $1000 that the insurance does not cover to get the neuropsych testing done on May 1 & 2. Again, she's a million dollar baby. I am so completely overwhelmed right now. I'm back to just wanting to crawl in a hole for a little while. But I know it will all be there when I come out of the hole so I might as well scratch that idea.

Carly and Kenneth had been arguing a lot and that was stressing me out too. Everyday I came home from work to find them arguing...again. I expressed to both of them how much I needed it to stop. I am so proud because they have worked together to fix the problem and things are so much better. Their biggest problem is that they are just alike. If we can make it to this Friday, Carly will have perfect attendance for 6 weeks- a first in her school career. She is very excited. She broke her glasses last Tuesday, in the middle of Anna's seizure, while she was playing on the monkey bars at the soccer field. I was hesitant to replace them because she rarely remembers to wear them. Then on Friday the school sent a note home saying she had failed her eye exam and must be seen and get new glasses. They show her as nearsighted and the last eye exam showed her as farsighted so who knows. I will take her soon to get that figured out. She is getting to be so grown up and has figured out that The Easter Bunny and The Tooth Fairy are not real. She is excited to be a part of the secret for her brother and sister though. Anna has it all confused though- she thinks it is The Tooth Bunny.

And then there is Gabe. SPOILED ROTTEN GABE! That is the sweetest kid but man is he spoiled. He is a mommas boy and he knows he's got me wrapped around his little finger, and all of this at a mere 14 months. He is eating like a pig and amazes me with what he can do with 2 teeth. He is getting closer and closer to walking but is still afraid to let go totally. I'm OK with that. We got a swing set and he loves to go down the slide, feet first, on his belly. He laughs the whole way down and gets the rest of us laughing too.

I'm out of time but never out of thoughts. I'll be back ASAP...


Sunday, April 1, 2012

365 And Some Change

How did Gabe get to be one already? I don't know. His first year was a whirlwind! He actually turned a year old on February 24th but we were all dealing with the flu and didn't feel much like celebrating. We ended up having a little family party on his due date- April 1. I was a hesitant to order a cake from a bakery because of the whole peanut allergy thing so I ended up making him some sugar cookies with icing. He loved them and in hindsight I wish I would have done the same for the girls. It was easier for him to handle and eat. At a year old he is 18.8lbs. He can say dada, mama, kitty, and bubble. He cruises the furniture and will stand alone for a brief second but doesn't seem all that interested in walking. Crawling is much faster! His favorite food is a donut hole which his sweet babysitter Christy brings him everytime she keeps him. He still sleeps all night- usually for 11-12 hours (yes, it is heaven)! He is the baby everyone dreams of having. And it's a good thing we got him because he is no doubt our last!!
PS- I ordered a book for Carly called "Views From Our Shoes" and it arrived today. It is full of essays written by children who are the siblings of special needs children. It explores their feelings about being the sibling. Carly has really been able to open up about some feelings after reading that other kids feel a lot like she does. If you have a special needs child with a sibling this is a MUST BUY!! Next stop...Sibshops!

Tuesday, March 20, 2012

The Toilet And Other Fears

Potty training, or lack thereof, is going to be the death of me. I try to tell myself to let it go but 4 year old pee and poop is just really not as easy to handle as 1 or 2 year old pee and poop. We have tried rewards. We have not punished. We have tried setting timers. We have tried just letting her wear panties to see how it goes. Newsflash- it didn't go well and none of these methods have worked. While she was still 3 it seemed OK to let it go but now she is 4 and for some reason being 4 and not potty trained is bothering me way worse than being 3 and not potty trained. Luckily she still fits in Pull Ups and will be able to for a long time to come. She just now wears the 2T-3T ones. Hell, she can still fit in a bumbo chair. So that's not the issue. I think what really bothers me is that I don't know if her not potty training is because of bad parenting or because of brain damage. Are we not doing for her what she needs to get it down and understand it? Or is it because her muscle control is poor? Or is it because she doesn't know to tell us or how to tell us? I don't know and that is what is really making me crazy. I think the fact that she will start school in the fall also makes me feel this immense pressure to have her trained by then. So then my thoughts go to what if she has to start pre-k still in Pull-Ups. Will the kids laugh at her? Will they be mean to her? I am having to start facing the reality of sending this sweet child to public school and I am scared out of my mind. I have to take her for testing tomorrow and I am scared of what they will tell me. I'm scared that it will be bad and that will make her even more different than the other kids but then I'm scared it will be too good and that they won't see that she does need extra help. It doesn't matter how many times we go in for testing, I am a nervous wreck every.single.time. That part just doesn't get any easier. I want my child to get the help and accommodations she needs but I don't want her singled out and I know I can't have it both ways. My mind is not ready for public school and my heart isn't either.

Wednesday, March 14, 2012


I was going to shoot for a least a post a week and I have already gotten an F on that assignment. Nice. I have spent the past few days really thinking about the "R" word. Ellen from To The Max had posted a video on her blog that was then on and it went from there. It was about the campaign against using the word "retard." Ellen received tons of comments and a vast majority of them were rude and some downright mean. The one that really sticks out to me is this, "retardation and other developmental disabilities are a burden to our health care system and our educational system." I think Ellen was right on when she said this person has much worse of a disability than our children- this person lacks a soul.

I must admit that I have not always been sensitive about the R word. In fact, growing up, it was a pretty normal part of my language. I did not understand how unkind it really was. It was not that I did not have people around me that were affected by the word. The little girl next door had severe cerebral palsy. I babysat her frequently and I loved that child. I just didn't get it. It wasn't until I met my husband that I understood what really was wrong with the word. My mother in law used to work for MHMR and she was finally able to get it through my thick skull why it was not OK to use the word as an adjective in the same manner that I might use the word big, little, or purple. There was always a ban on the R word in her house. I had trouble at first adhering to her no R word policy but as time went on it just fell out of my vocabulary. I am so thankful for that.

So I have really been going along thinking most people say the word just as I did- not ever meaning or realizing what they were doing. I was pretty happy to live in that little world. After reading the comments to Ellen's video on CNN I have been really saddened. It appears that people really are mean and cruel a lot of the time and do mean the word in the context like they used above. They see my child and other children like her as a burden to society. If you have ever met Anna you would see that she is anything but a burden. Is she a lot of work? You betcha. But you know I was always told that anything worth having would never be easy. My typically developing kids are a lot of work too and I don't consider them burdensome either. I wanted children. I love my children. The burden is not my children. The burden is dealing with close minded people who cannot see past a disability.

Some people with disabilities may have them so severely that do not understand what is being said to them or about them but the vast majority do understand. Anna does walk funny and runs funny and her speech is a little difficult to understand but she understands every bit of what is being said to her and about her. She even asked me one day ,"Momma, why my muscles not work right?" It broke my heart because it was my first realization that she knew she was different from other kids. She will face this all of her life and she does not need any help from anyone else to point out her differences- she lives with them.

So please, think about removing the word from your vocabulary. You may be one of those people without bad intentions but wouldn't it be nice if I and others in my position didn't have to decide which side of the fence you were on? We would know because the word just wouldn't even be in your vocabulary.

Tuesday, March 6, 2012

Growing Up WAY. TOO. FAST.

At Long Last

OMG. I am finally blogging. Should I even try to catch you up on the past months or just pick up from here? I don't even know. Maybe a bit of both would be good.

I took a few posts and changed them to "drafts" so they are not gone but not viewable at this point. They explain the hell we have been through since my last post (that remains published). The short of it is that my mom and dad, for some reason I will never ever understand, went crazy and we ended up in court getting a protective order against them. The protective order wasn't enough so then we moved. Things were slowly getting back to normal for us and then I got a call from my grandmother that my dad was diagnosed with cancer. My parents were acting more normal and so we decided to have the protective order removed. I was not sure how much time I would have left with my dad and felt that I needed to somehow make peace. I have contact with my parents now but I keep some very firm boundaries. They do not know where our house is and the kids are not ever left alone with them. I do not for see these things changing anytime in the near future. The relationship with them is very different but at least it exists now. I cannot even begin to explain all that happened. It still just doesn't make any sense and I doubt it ever will.

So when we moved Carly started in a new school in a new district. She is so happy there. She has made a lot of friends. She spent the first half of the year in remedial reading because she was so behind from the crappy district we had been in. By December she was caught up and then transferred into the dyslexia program at her school. The changes we have seen are amazing. She is making so much progress and I have no doubt that moving her was the right thing to do. I really try to find positive in all things and if my parents being crazy gave us the push to move and get the kids in a better district then I guess it was worth all of the heartache and headache we went through. Carly continues to be such an amazing sister to Anna and Gabe. She is playing soccer again this season and really making strides there as well. We did a trial off of her ADD meds and it did not go over well. I think her teacher was about ready to kill me and I was about ready to lose my mind. It lasted a little over a week and her grades and behavior determined it would not work. We took her off to see just how much of a difference it was making and also because she was having issues with weight gain. She is now on a different med. She is not eating any better but is doing much better at school. We give it to her Monday-Friday and not on the weekends. It makes the weekends difficult but we have to have some days that we can cram her full of calories. The time away from my parents was difficult for her because they had always been close but kids are resilient and now it's like she never missed a beat. But the smart mouth on that kid- it has got to go. I don't know where she gets it;)

Anna Banana- where do I begin? She has been doing well. She still has her delays but overall we are moving forward and that is what matters. She will always move at her own pace and that is OK. She was evaluated by the school district at the end of last year and we were told that although she was in the 17% for speech that she did not qualify for services. I was OK with that at the time as I buried my head in the sands of denial. I had so much other stuff going on that it was just easier to pretend things were fine. They are not fine. I mean I am fine with the fact that her progress will always be on her own timeline but it is not fine for her not to get the help she needs. So in January I called the special education department and asked them if they really thought it was OK for me to send my child who isn't potty trained, who has seizures, and who is only understood about 50% of the time into a regular preschool classroom and just act like everything is fine. They tried to tell me that basically yes, they did expect that. I threw a fit. Somehow it worked. Now Anna is qualified for special services under a different category than just speech impaired, etc. Now she is under "other health impaired" and that makes things a bit easier. I have to take her this week for further testing with the district to see just what she needs. I know the battle is far from over. She is also having some neuropsych testing done as ordered by our neurologist to see how her seizures are affecting her behavior, memory, etc. That is going to cost an unbelievable amount of money so we have applied for the Texas Medicaid buy in program. I do not think we will qualify but I didn't think it would hurt to try. Anna is playing soccer this season also. I am so proud! That child just goes and tries and does and never says she can't. She continues to amaze me daily.

Then there is sweet baby Gabe or "Baby Gate" as my nephew calls him. That child is nothing but sheer joy. He is so sweet and snugly and smiley. He just turned a year old and I can't believe how fast time has flown by. He is crawling and cruising the furniture and says Dada, kitty, and bye bye. At one year he weighed 18 lbs and was 29 inches long. 4% for weight and 40% for height- yep, another tall and skinny one. He had not gained any weight since his 6 month appointment so we are working on that. He eats from the time he gets up until the time he goes to bed so I am not worried. It isn't like with Anna where she was skin and bones. Gabe looks very healthy. He also has the milk and soy protein allergy and that limits a lot of the fattening things kids eat like milk, cheese, ice cream, etc. He is taking Alimentum still. Dr Goff wanted us to try Neocate Junior but Gabe prefers to throw bottles of that across the room out of disgust. I think we'll stick with the Alimentum. We also discovered a severe peanut allergy in him around Christmas when a taste of a peanut butter cookie ended up in a horrible case of hives. One allergy Dr and allergy test later and we are now the proud owners of an epi pen and allergy plan. That kid- he was supposed to be the easy one. Oh well, he still is for the most part.

I have a million funny stories to tell and record here so they are never forgotten but I can't do it all in one day. I am only home today because Anna had the flu, then I got it, now Gabe has it. During all the craziness I got a promotion at work and am now the ICU Supervisor and I work M-F 8-4ish. No weekends. No holidays. That has changed our lives so much for the better. Consistency is key with kids and when Kenneth and I both had rotating schedules they just couldn't keep up. Now they know I will be home every day shortly after school and we have dinner as a family and do homework... It has been a welcomed change. I apologize for my absence from the blogging world. I am back now and I promise I am better than ever!