Where Did The Time Go?

Wow.  6 years old. Where did the time go?  

I can't believe how much she has grown from that tiny little 5 lb 13 oz baby.  She wanted to take cupcakes to school today but she insisted they had to be purple and we couldn't find any purple ones. She wants everything to be purple. Luckily we were able to find a purple cake and so she decided that would do.  She got to celebrate at school this morning. 

She was having a great day and then she had a seizure. A pretty nasty one that lasted much longer than usual. I was at work and got a call that she was in the nurse's office and pretty much unresponsive.  That phone call broke my heart. Can't she have a one day, her birthday, wheee she can just be a kid?  I hurried to her school and she was still post ictal. I picked her up and carried her to the car and got her home. She finally woke up for a few minutes then went back to sleep and slept for a few more hours.  Then she woke up and it was like nothing had ever happened. She was bouncing off the walls. We had told her we would go out to eat anywhere she wanted to go. She chose McDonners (McDonalds to the rest of us).  So we went and she played and she was fine. She has no recollection of what happened or how she even got home. Seizures are so weird. Her party was supposed to be Saturday but the weather is forecasted to be super nasty so we have rescheduled the party for another date. My sweet Anna. She has gone through more in 6 years than most people do in a lifetime and she just keeps on smiling. The world is so much brighter because she is in it. 

Well Done Faithful Servant

This man was perhaps the best grandfather in the history of grandfathers. As a child I didn't get to see him as much as I wish I could have been we saw him at least four or five times a year.  We lived too far away but my parents did their best to make sure we saw him as often as we could.  He loved to tell stories and to laugh.  And when he would laugh his cheeks would become a rosy red and he would light up the room.  He took me skiing on both snow and water.  He owned grocery stores and he let me pretend I worked there.  It was back in the day when you used a price gun to place a little white sticker with a price on each item.  I always tried to impress him with how fast I could place those stickers.  He let my sister and I climb on boxes and we could have more fun in that store than any playground could ever offer.  And after the store closed at night while he was counting money and figuring how the day had gone my sister and I would see who could produce the longest cash register receipt tape.  I live in a fairly small town and it happens to be the one he had his stores in.  I've never found a person in this town who had a bad word to say about him- even those who never knew we were related.  What you hear is person after person telling of how he helped them through a dark time and made sure their family didn't go hungry.  He went to church on Sundays but more important than that was the way he lived his life every day, Sunday or not.  Over the last few years Parkinson's robbed him of so much.  It robbed me too of more good times with him.  One thing it couldn't take though was the love I had for him.  I'm certain he's in heaven now and no longer suffering.  And I'm certain that when he arrived there he heard the words,"Well done my faithful servant, welcome home."  RIP Pipi.  You will be missed.  Weldon Thurman Scivally 6/29/32-11/7/13

The Horror Story That Wasn't

We finally had the bid ARD meeting (I think other states maybe call it IEP?) and it went, well, better than I could have ever imagined.  I've read so many horror stories about these meetings.  I was a bit afraid but went in hoping for the best.  And that's what I got.  I don't know if it's that we are just amongst great special education people or that my expectations are realistic or maybe a combination of both but I'm just so thankful that this is one thing that doesn't have to be a fight.  We went over Anna's speech scores on her latest testing.  On this particular test "normal/average" was 10 but anything as low as 8 was acceptable.  There were many subtests within the tests and Anna's scores were anywhere from 4-8.  Then there was the articulation test and she not surprisingly fell in the 1%.  

Their biggest concern is that her scores are the same as they were over a year ago when she was tested.  So she will get speech at school for 20 minutes twice a week.  That may not sound like much but for Anna it is a lot.  Her attention span is like that of a fly.  So here's where I'm at now- her articulation is poor.  I knew that but putting a test score to it makes it more quantifiable.  I am beginning to wonder if we need to look into some sort of augmentative communication device.  It's not that I don't think she will improve. I absolutely think she will.  But in the mean time she needs to be heard and understood.  She said the speech pathologist is using an iPad with her so I don't know if they are already headed in that direction or what they are doing.  Then we set classroom goals.  They want her to know the entire alphabet and to be able to count to 40.  They want her to actually recognize numbers 1-20.  I think the goals are quite lofty but worth trying to reach.  Anna is making amazing progress.  She can now write her name and recognizes about 6 letters.  Check out the bottom left of the page in her folder because this little lady wrote her own name.  

 She can always count to 4 and then sometimes to 10 depending on the day.  She had been spending 30 minutes in the typical Kindergarten class daily.  This was a major stressor for Anna.  She would come home crying about it daily.  After spending weeks trying to find the source of her stress if turns out it had to do with the volume in the room.  If things get too loud she gets overwhelmed and shuts down.  Her PPCD class has 7 kids and the typical class is more like 20 so I can see how that would be a shock to the system. She was going to the typical class during centers and we decided that was actually the loudest time so she now goes during a structured activity and that has helped too.  We also recently saw the neurologist who suggested maybe Anna falls on the autism spectrum  Anna will be having neuropsych testing done again and they will zero in on this.  Anna's seizures have continued despite normal Tegretol levels.  She will be having another vEEG done soon but luckily this one will be done within the walls of our home.  I'm SO thankful for whatever genius came up with the home idea.  So that's the Anna update.  It only skims the surface of all that is going on right now.  I had to start somewhere though.  More to come...

What Research Says

Hmmm, describes Anna's situation.

http://www.ninds.nih.gov/news_and_events/news_articles/pressrelease_cerebral_palsy_09092013.htm

A Quiet Little Meow

We are 3 weeks into the school year AND we are all still alive.  Not only are we alive but we are actually doing well minus the driving to 2 different schools on opposite sides of the county twice daily to take and pick up the kids.  The schools are 26 minutes apart.  They both start at 8.  One ends at 3 and the other at 3:30.  I don't like it.  At all.  But I will keep on keeping on because it is the best for the kids who will some day decide which nursing home to put me in.  Hopefully they will look back and see my struggles and have mercy on me.  Carly is doing exceptionally well (with the re addition of her ADHD meds) and at mid 6 weeks has all As on her progress report.  This is a first.  I think one of her teachers looks down on the fact that I pulled her out to homeschool her last year but I think the fact that her grades are better than they have ever been says I must have done something right.  Yes, she is a bit behind in her multiplication facts BUT when I pulled her out in 3rd grade we had to go back and redo 2nd grade math because it was obvious she had gotten by but had not really learned.  So the fact we did almost 2 years work in less than a year makes me ok with the fact that she needs a little more time to memorize her facts.  I didn't send her with ADHD meds on the first day and she came home asking me to please restart them.  I think most kids resist the meds so the fact that she requested them spoke volumes.  I'm glad we went almost a year without them but I'm ok with her being back on them also as long as she clearly needs them.  Ideal?  No.  Reality?  Yes.  On to Anna.  She is still only having about 1 accident a day in panties.  It is awesome.  The accidents are usually in the evening when she gets tired except there was that one night when I forgot to put her in a Pull Up for bedtime.  Oops.  She is loving her school too.  I had a near breakdown thinking again maybe she wasn't in the right place.  It went something like this- I asked her teacher if she thought this was the appropriate placement for Anna.  She said if it were her kid she would put her in "regular" kindergarten.  So then I freak out thinking I've done the wrong thing, scarred her for life...  So I call and talk to the special Ed coop head lady who reminds me that special Ed teachers have difficulty discerning what is "normal/typical" because they are rarely around it.  Basically, yes, my kid may be the valedictorian of her PPCD class but that doesn't mean she is academically ready for the other Kindergarten class.  We are going to discuss this further at her next iEP meeting which will take place fairly soon.  I will hold off on details until after the meeting because honestly if I start typing then I start thinking then I start over thinking and then I want to drink a 12 pack of Straw Beer Ritas.  None of this is healthy.   In the midst of all of this my great grandmother died at 99 years of age.  I was sad for my grandmother that she lost her mother because there isn't really an age where it's ok to lose your parent but I felt happy for my great grandmother who finally got to go reap the rewards of a life spent teaching others.  She started teaching Sunday School at 11 years old and did so until 80 something years of age.  I bet her treasures in Heaven are amazing.  I took Anna and Carly to the visitation at the funeral home but not to the funeral itself.  Carly did well.  Anna wanted to know when that lady was going to wake up, why there were roses on that lady's box, and she also informed me that heaven is full of dead people.  The next day Carly asked how the funeral went.  I said it was nice.  Anna said,"Was that dead lady there?"  I'm glad I didn't take her but I'm glad she got a little exposure to death.  There is never a good age to do that but I think all In all it went well.  Kenneth is finally done with physical therapy and back on his regular shifts at work.  Thank God!  I love him so much but when he has been gone every third night for 11 years it is a hard adjustment to have him home every single night for 6 weeks.  My hats off to you ladies who have your husband home every night- I'm not cut out for that.  I need my time.  Yes, the kids are here but when they go to bed it's just me and I love it- like right now.  I think I posted what happened to him but just in case I forgot- he tripped over the cat getting out of the shower and dislocated his shoulder which was I guess pretty bad because it took 2 hospitals, 1 ambulance ride, and an unprecedented amount of narcotics before they could finally get it back in place.  I want to thank the lady who would let out a soft "meow" every time he walked into physical therapy.  She's my hero and doesn't even know it.  Well, I suppose I must get to bed.  Gabe is in the midst of an ear infection and sleeping like a newborn so I had better get an hour of zzz zzz while I can.  Night.

First Day Of School

Big Girl Panties (Mine not hers)

The supplies have been placed in her cubby.  The meds are packed up to take to the nurse.  The ARD meeting has happened.  The lunch is packed.  The outfit is laid out.  The hair is washed.  The forms are all filled out.  All of the tasks are done and all of the things are ready.  But then there is me.  I am not ready.  I know this has to happen but my heart is breaking anyway.  We met Anna's teacher on Thursday night along with the classroom aides.  They could not have been nicer people who seem genuinely kind and caring and have a heart for the kids in the class.  That maybe eased my mind a little but certainly not enough.  I'm just going to lay it out there and if you are offended by it then I apologize.  This is my blog and my feelings- I'm not always right but one thing I am is entitled to my own thoughts and feelings.  When I first met with the head of the special Ed co-op I was excited about the prospect of PPCD.  It sounded great.  The main purpose of the class is to immerse kids in language.  If for no other reason at least they will have the language to make their needs and wants known which can really cut down on undesirable behaviors.  I mean really, what could be better than my child really getting better with her language skills.  The plan was to let her spend some time in the regular kindergarten class for socialization but then to put her in the PPCD class for academics.  Again, great plan.  She would start with 30 minutes a day in the regular class and increase as she tolerates with the eventual goal by the end of the year being for her to tolerate the entire day in regular kindergarten with minimal extra support.  She would then repeat kindergarten again next year in the regular classroom.  But then we went to meet the teacher night and my heart broke.  Reality is a bitch and she slapped me in the face.  There we were in a room full of kids and I somehow felt my child did not belong there.  I felt like she was too high level for this class.  Most of the kids are non- verbal and although my Anna is not the easiest to understand she is certainly verbal.  Most of the kids had some physical deformity and my Anna did not.  I suddenly found myself feeling like the snob of the PPCD room because clearly my child did not belong there.  But then I sat and talked to the teacher and the more we talked the more I realized she belongs there just as much as any other child in the class.  She needs the close supervision and attention that she can only get there.  She needs to be able to be taken to the bathroom every 30 mins- 1 hour.  She needs the extra understanding that is required when dealing with kids who have disabilities.  I'm learning that even as I think I have accepted things and that I am so understanding in the special needs world that I too still have ideas and prejudices that I didn't realize existed.  In the end the only thing that really matters is that my child is in the best setting to learn and that she is content.  It's time I put my big girl panties on.

When All Of A Sudden

She just got up that morning and she had made up her mind.  She was going to do it.  I wasn't sure how it would go given the 5000 epic fails we have had in the past, but I knew I had to support her and we had to try.  We had tried every incentive program we could think of.  We hadn't ever punished.  We tried to bribe, too, because we are so not above that.  We bought the required clothing and it just sat in her drawer, unused, until she decided she was ready for it.  But that particular morning she woke up and she was ready for them. Panties.  Little pink and yellow La La Loopsy panties.  She put them on and she was determined to wear them all day long.  She has now been in panties 3 days and has had a grand total of 3 accidents.  2 pee, 1 poop.  Not too shabby.  I cannot believe this day has finally come.  She amazes me but more than that she teaches me patience.  She teaches me that she will get it in her own time.  And she finally did.  5 years, 8 months, and twenty days but who is counting?

She Grew Up

I sat there today, staring at her, talking to her, and simply wondering when it happened. When did she grow up? Overnight it seems. Or maybe over a summer, but either way it happened. This beautiful young lady (who tries to push me over the edge on a daily basis) is that same little girl that I gave birth to 9 years ago. 9 years. It seems like so long ago but also just like yesterday. I'm afraid to blink again. She will be driving and having a boyfriend and then leaving home. My baby.

 She read the menu and picked what she wanted and ordered her own food and drink.  She even said yes ma'am and no ma'am and please and thank you to the waitress.  Somedays I beat myself up thinking I have failed her and then we have a day like today and I know things are going to be ok.  We spent most of the day together, just the 2 of us, and we both needed it.  

Anna, she's no exception.  She's 5, soon to be 6.  She's starting public school and I would by lying if said I wasn't scared out of my mind.  Her ARD meeting to develop her IEP is this Friday.  I'm pretty sure I already know how things will end up.  She will be riding the bus to another campus for PPCD.  She will do a little kindergarten for the social time but then when they begin working on academics she will switch over to PPCD.  I would be lying if I said I'm ok with it.  I mean, I am ok with it in the respect that I think it is the appropriate placement for her.  But in the whole reality scheme of things I am totally not ok with it.  I swear I come so far with acceptance and then it's like I have to start all over.  I get mad because things didn't have to be this way but more mad about how we were treated after the fact.  I have thoughts that I hope every time that particular Dr sees a kid with developmental problems that he has to think of my kid and the coldness with which he said "shit happens."  I hope that he never again acts so flippantly about the quality of someone else's life.  For a long time I reconciled that things were ok with Anna and would be ok with her because her "noodle" was completely intact.  Don't misunderstand me- things are ok in the sense that we will make it and things could be so much worse.  But what I'm struggling with accepting is that while she is smart and witty her "noodle" is not totally intact and she will struggle from here on out because of that.  No, I cannot tell the future but I'm not an idiot.  When your kid is 5 1/2 and knows 2-3 letters and can only count to 4 it doesn't take a rocket scientist to see things are not exactly on track.  So that's where I struggle right now.  I allowed myself to live in the fake world where she would have a weird gait and strange speech but that would be all we were dealing with.  Now reality is setting in, again, and it hurts.  Instead of going to meet the teacher night full of joy I am sad that a short yellow bus will pull up to my house every morning and pick up my child to take her to a school that is not where she should go.  I am sad that I will have to go teach the teachers and aides how to bolus feed her and when to medicate her and what things to watch for.  I know they have done it all a million times...but not with my child.  I am not sad because I have Anna.  Make no mistake.  I am just sad that our reality is not what I had made myself believe it would be.  I will adjust and of course Anna will adjust.  She always does and then I'm left feeling like an idiot for ever being sad in the first place.  Again, this kid teaches me lessons every single day and I know this will be no different.  But for now, she is growing up too and I am scared.

The Skinny On Our Summer

I must update on the Great Wolf Lodge.  After sending them that message via their website I received a phone cal from them wanting to make things right on our return trip.  They did.  We had a much better time without any problems.  They gave Anna a tube with a bottom in it to use which made quite a difference for a bit but then she refused to use it.  They allowed her to use the slides she wanted to use and because there were more adults in our party this time we were able to take her to do other things too that we could not do before.  We had a blast and will definitely be going back.

Prior to going back we sent Carly off to her very first camp- it was a 5 day church camp and the longest she had ever been away from home.  She was very nervous but excited to spend a week with friends and without parents and siblings.

I knew we would miss her but I missed her far more then I expected.  Her time there at camp was priceless though as she made the decision to accept Christ while she was there.  I had seen an update on the church's Facebook site saying a child had made a decision but I had no idea that child was mine.  I was so humbled by all those who prayed for her while she was at camp.  I know she doesn't know it fully yet but this was a defining moment in her life, the defining moment in her life.  She can't wait to go back next year and I can't wait to send her.  I'm even considering going with our church.  Yep, I'm pretty sure I've lost my mind.  As usual, God knew what he was doing and I am so thankful all things worked out where she cold go.  The first night she was gone I was bathing the 2 little kids and heard Kenneth calling for me from our bathroom.  I assumed he had forgotten to get a new bar of soap or blade for his razor or something.  I waltzed in there to find him laying naked in the floor and saying "honey, I'm hurt bad."  As much as I hated to I had to tell him to lay there and hold on while I ran and got the 2 littles out of the bathtub.  I hurried them out and went back to him.  He was pale as a ghost and unable to really move.  Apparently he was getting out of the shower and tripped over the cat and then slipped on the tile and tried to break his fall and ended up dislocating his shoulder.  I considered calling 911 to come get him because he looked so bad but then I thought about his coworkers showing up and him being naked in the floor and I decided against it.  Somehow together we got him up and dried off and semi dressed.  My friend Julie came to watch the littles as we headed off to the ER.  As much as I HATED to use the little local ER I knew he would never make the ride to Denton.  So we went local and they tried multiple times and could not get the shoulder back in place.  He ended up transported by ambulance to Denton where he got more meds and they were able to put it back in place.  He is in this horrendous looking contraption for 6 weeks and hopefully it will heal.  If not he will be looking at surgery but we are believing it will heal perfectly.  He goes back to work Monday on light duty and I hope all goes well.  It has been about 3 weeks since it happened and he has already made great progress.  

This summer also brought Carly's 9th birthday.  How is she 9 already?  We spent the day at American Girl in Dallas and the girls had a great time.  She had wanted to go there for years and I felt like she was finally old enough to really enjoy it.  She did.  She is growing up so fast.  Part of me wants her to stay where she is and part of me can't wait to see the lady she grows up to be.  She tries my patience on a daily basis but she is an amazing kid and I am so lucky to have her.  Homeschooling went well last year but my job change has dictated that she needs to be back in public school.  She is excited.  I am still not sure what we are going to do with Anna.  She could go another year to The Little Lighthouse where she goes 2 1/2 days a week and gets very individualized lessons and therapy or she could go with Carly to public school.  I won't lie- having them in the same place on the same schedule would be so nice.  I get so tired of always being on the road.  But that is selfish.  I just keep praying and hoping the right answer will slap me in the face.  We go Tuesday to start working on a plan with the public school for her.  Knowing what they want to do may help make up my mind.  She will either end up with a paraprofessional who stays with her in a regular room, in a life skills class at another campus which they would provide transportation to, or at a PPCD class at yet another campus where transportation would also be provided.  I don't know what I want for her.  It's almost like I need to decide whether I want her to flourish more academically or socially.  The thought of loading her up on the short bus makes my heart want to break.  Reality is so mean sometimes and although most days I'm ok somedays it just breaks my heart.  So I will keep praying and trusting the right answer will appear.  

This little kid will be staying home a few more years and I'm thankful I don't have stressful decisions to make about him right now.  He's a mess but he keeps us laughing.  He has moved to his big boy bed this last week and I am so proud of how well he has done.

Somedays he seems so big and then I look at I'm in this bed and realize he's still such a tiny guy.  Medically Anna is doing about the same.  I don't even know if I had posted about it before but she had been having episodes of falling down all the time.  Her seizure meds were reduced hoping it was a side effect.  For whatever reason the reduction seemed to work for a a week or so but then we were right back where we started.  All summer it has been a big fall fest.  Our house is tile so you can imagine how that has gone.  You constantly hear splat then crying.  I had talked to our neurologist about it and he said he felt she was not overmedicated and that she just needed more physical therapy.  Then she had a pretty bad fall outside and lost 3 teeth.

The bottom one fell out on impact and the top 2 front ones were pushed back.  It nauseates me to look at it.  The dentist checked X-rays and luckily the roots were ok so they just pulled the top ones.  She may be toothless for awhile because they were not quite ready to come out.  But they will come back no I am thankful she is ok and that they were at least baby teeth.

Up inside her mouth was so bruised up.  Poor baby.  And her speech.  OMG her speech.  It was hard enough to understand her before.  Remove the front teeth and it is next to impossible.  I say " What did you say?" and she yells louder as if volume is the issue.  She is no less frustrated than the rest of us.  About 2-3 weeks ago we had her levels checked and her Tegretol level was low.  I already knew before the labs were done because her behavior was so different.  They raised her level and now the falling has stopped again.  Sigh.  I hate seizures.  I suppose we will have further talks about this with neurology.  Anna is also throwing fits about her nighttime feeds so we are switching to boluses hoping to avoid the nights.  She doesn't like being tied down to the pole and I don't blame her.  Her eating has picked up but so has her upward growth so we still aren't really making any progress.

I started a new job a few weeks ago.  I am now a hospice nurse.  I am loving it so far.  My home health job was just too busy and they kept demanding more and more of my time, time I did not have to give.  God placed this hospice opportunity before me and it was clearly exactly what I needed and had been looking for. 

 My sister and her kids came to visit this summer.  They have lived in Georgia for years and are about as southern as you get...until now.  They have had to make a move to Long Island for my brother in law to complete a plastic surgery fellowship.  It is a huge opportunity but one that has been hard for them as they are readjusting to life as they know it.  I was so glad to see them be ease I'm not sure we will ever be able to visit them there.  Financially it just probably isn't feasible.  These are all of our kids with our parents.

The kids got to play a day at Great Wolf and then another day just playing in the water at our house.  As long as they were together they didn't care where.  I hate that life has placed these cousins so far away from each other but I know miles cannot separate love.

As the summer comes to a close we will spend as much time as we can being lazy and hanging out in our swimsuits.

It has been a busy summer with lots of twists and turns but at the end of it I know one thing is for sure.

I am so thankful for the promise that is forever.

My Message To The Great Wolf Lodge

I have a special needs child who is 49" tall and weighs 38 lbs. She is 5 years old.   She wanted to ride on the slides that are at Whooping Hollow.  In the name of "safety" your staff would not allow her to go down the slides because she is too tall although adults much taller than her are allowed to go down the slides because it is "safer" for their children to go down with an adult.  If this rule exists for safety as your staff claims then you should really examine the rule because putting a child who does not weigh enough and cannot follow directions well enough to go on the other slides is not the safer option.  As a "family" waterpark and one who raves about their compliance with ADA standards I would think you would make some attempt at inclusion of children who would like to enjoy a waterside just like other typically developing children do.  We are scheduled to stay again at the end of July but I'm not so sure now.  The indoor waterpark was a nice thing because getting too hot increases my daughter's seizures, but I was sorely disappointed that we were inside yet she wasn't allowed to ride the 2 slides that she was capable of.  We were offered a free Magic Quest Wand or a free dinner as a way to make her trip "special" and to I suppose appease an upset mother.  I refused both.  I don't want free things.  I want my daughter to be able to enjoy the park she had looked forward to for a very long time.  Shame on you for your treatment of patrons with special needs!

5 and 6

And 3 million years later I finally post again!  Some huge life changes have occurred since my last post.  Since graduating from nursing school almost 10 years ago I have worked in critical care and the 2 years I worked for a Dr and not the hospital still involved critical care.  I knew about 1/2 way through nursing school that critical care was my love and I never imagined doing anything else.  I thought critical care was my purpose.  And it was...for that season of my life.  After a long chain of events at the hospital where I had worked for so long it became evident to me that I could no longer work there.  There were some fundamental differences in the way I think people should be cared for and the way the hospital thinks patients and staff should be cared for and I could not stand by any longer and pretend to be ok with the direction in which things were moving.  So I left.  It was hard and it was sad because my coworkers were like family but I knew that the bonds we had formed would not be broken by a job change.  I was scared to start something new but I also knew that the same God who had laid it on my heart to leave would continue his plan and take care of me.  I took a job doing home health and I couldn't be happier.  I go to these patient's homes where I care for them and listen to them and I swear that they minister more to my heart than I ever could to theirs.  Most of my patients are in their 70's-90's and they are the most awesome generation.  They are not of the entitled generation.  I want to adopt each and every one of them.  I am so at peace in my new job- a peace I had forgotten because I had no idea how unhappy I was at the previous job until I became happy again.  I took a decent size pay cut but God knows our needs and has made up the difference.  It was a huge step to trust that we could afford an $8+/hr cut but the trust and obedience has been honored.  Kenneth is working a second job on his days off from the firehouse which has actually made him happier as well.  Not being cooped up with the kids everyday has provided him a whole new freedom.  An amazing lady comes to our house and cares for the kids and loves them like they are her own.  God knew I needed her too!  Enough about all of that.  Now on to the kids.  Carly continues to grow up and I fear the hormones are kicking in.  I'm afraid...very afraid.  She's moody and generally just acting more and more like a teenager.  On a good note though she is developing some understanding of responsibility and chores and for that I am thankful.  She's understanding the whole you scratch my back I'll scratch yours thing when it comes to her doing chores equaling me having more time to do things with her.  Don't get me wrong, she is still pretty much a slob but I see progress.  Gabe is doing well too minus the nice GI virus that left him with diarrhea for 3-4 weeks.  No lie.  It was not fun for any of us, and yes, a virus apparently can last that long.  Just ask Dr Goff who had multiple patients with it.  He is talking more and more (especially when his sisters are gone) and has a fascination with tractors and (big surprise) fire trucks.  And then there's Anna.  She got the dreaded virus too and it was for sure worse on her than anyone else.  Just imagine the horror though- 2 kids in diapers each with diarrhea each for 3-4 weeks.  If we never repeated that scenario again I would totally be ok with it but Huggies stock might go down.  Then there was the weight loss that occurred with it- she's back down to 38 lbs.  she was up to 41 before the virus.  Grrrr- 6 months or more to gain it and 1 month to lose it.  She's certainly opposite of me.  She also had another pyloric dilation which appears to be helping her reflux so we will hopefully be backing off on her meds a little sometime soon.  She was able to button a button last night.  I don't think she knew what a big deal it was but I certainly did.  She is still struggling with toilet training and I'm about to the point of just accepting it may never come.  I hate to give up because deep down I know she will do it but it stresses me out and when it comes right down to it, she will do it when she is willing and able and not a second before.  I am thankful that Medicaid now covers her Pull Ups because that makes the acceptance a tiny bit easier.  Although she still only recognizes 2 or 3 letters I am finding that she knows how to say the names of more letters so that is great progress.  Numbers 5 and 6 though, the stupid numbers 5 and 6.  She can't remember it.  It's always 1,2,3,4,7.  Oh we'll, that's more numbers than she could say at this time last year so any forward movement is good.  Right?  I get so frustrated though because anytime I try to work with her (even when I disguise that it's work) she just shuts down and refuses.  I know she's frustrated too and I don't know how to help her.  Anyone ??  She will probably be getting new SMOs (Suresteps) soon too and I know that will be another battle, but a battle that will be easier win now than 10 years from now.  Here are a few recent pictures just so you can see they are still adorable- that will never change.

PS- I posted entirely from the phone, pictures and all so I hope it formats itself correctly.

Why Sibshops Rock

I had not ever heard of this thing called The Dirty Scurry.  As much as we are at Cook Children's you would think I would know of any big fundraisers they were having.  But I didn't.  Then a letter arrived from Kat, the sibshop leader, for Carly.  Someone had offered to sponsor 15 sibshop kids in The Dirty Scurry, a mud run to raise money for Cooks.  Carly was excited to go even though she had no idea what a mud run was.   As a sibshop kid, not only would she get to do the race for free but she was a VIP.  It was a little over a mile with 12 muddy obstacles and 1500 kids.  I was so proud of her that she finished and she actually enjoyed it.  She can't wait to do it again next year.  If you have sibshops in your area I highly recommend getting your typical child involved.  The typical child develops a group of friends who "get it"- you know, like how parents of special needs kids just "get it".

Living Life: Nursing Home Style

So I think I had left off where we were waiting to do our nursing home stay to finally secure our place in the Medicaid waiver program.  It was strange trying to explain what a nursing home is to a 5 year old let alone trying to explain why we had to stay there.  We arrived around 8PM and were told we had to stay until after midnight but could leave any time thereafter.  I actually thought we would just stay the whole night because once we get Anna to sleep it is wise not to wake her.  Kenneth stayed home with the other 2 while Anna and I loaded up and headed to the nursing home.  It was storming hard and pouring down rain there and all I could think about was the Casting Crowns song "Praise You In This Storm" as I drove there.  Who ever thought I would be spending a night in a nursing home with my child as hopefully the final hoop to jump through to secure what my daughter so desperately needs. 

Anna fell asleep rather easily after watching a few episodes of iCarly.  I had just drifted off when Kenneth called and all I could hear in the background was Gabe screaming and crying.  Kenneth is not the type to ask for help so I knew when he called things must be bad.  Luckily it was after midnight so I loaded up all of our stuff and a sleeping Anna and headed home.  I was pretty much unable to console him either.  He was clearly miserable and had a fairly high fever also.  I took him to the Dr. the next morning and was told it was likely something viral and to give him Motrin and Tylenol.  No sooner had I gotten home from the Dr when I looked in his mouth and found this-  this was one of the many blisters covering his tongue and mouth.

I gave Motrin and Tylenol all day with no relief for him.  He couldn't eat, drink, or sleep.  After hours of that I finally decided to take him to the ER.  They gave him some magic mouthwash which numbed the tongue and he continued to cry and cry.  They finally gave him some Tylenol with codeine and thank God he calmed down and suddenly became this kid...

This dreaded virus went on for about 10 days.  I later found out from our pediatrician that it is called Acute Herpetic Gingivostomatitis.  It arises when a child has their first exposure to the Herpes I virus (think fever blisters).  I'm not sure where he picked it up but thank God that after the first time it isn't ever supposed to be that bad again.  So, back to the nursing home.  It really wasn't so bad.  The one we chose had a small aviary inside so Anna was content to just look at the birds until it was bedtime.  After the stay was complete we were called and told Anna officially has Medicaid and that we now get 28 hours of respite care per week.  Amen!  We chose what is called the CDS option which allows us to hire who we want for the hours we want and we just pay a fee to a service to take care of all of the tax stuff.  The other option is an agency option.  I really wanted to choose who is with Anna so we went with CDS.  It is a little more work in the beginning for me but in the end it will be worth the peace of mind.  I never wanted to "depend on the system" and I hope to always be able to carry a primary insurance and not depend on Medicaid for everything but I must say that having that little card has opened doors I never imagined existed.  Anna is finally able to get private speech therapy that our insurance never would have paid for.  The 20-30% of her medical expenses that our insurance didn't cover are now covered.  For those without medically dependent kids I am sure you are wondering how much 20-30% could really be.  Trust me.  It is a lot.  Like multiple hundreds of dollars if not more per month.  Since Anna's birth our financial situation has been difficult.  Please don't read that as blame.  It is not.  We have not always made the best financial decisions but the bad decisions were much harder to recover from with the mounting medical costs.  I think for the first time in 5 years we can breathe from a financial stand point.  We might even laugh and be silly just a little bit more because financial problems do create stress.

Homeschooling with Carly is still going well.  We are still finding what works for her.  I am really enjoying getting to spend some 1:1 time with her most days the teaching is good for me too.  It makes me use my brain and get creative with ways to make things stick with her.  She is so smart is scary.  They say kids with dyslexia are usually exceptionally smart.  They are not lying.  She is an old soul who is wise beyond her years and I couldn't be more proud of her for the lady she is becoming.  She has learned to be kind and to respect all kinds of people at a young age- something many adults cannot do.  Don't get me wrong, she is still an 8 year old but she is just amazing! 

Anna and Gabe are amazing too. They all light up my world every day with their sweet smiles. Although I love having them young I also am excited to watch them grow up and to see who they become- they all have so much potential.



Rest In Peace Gavin

I had some time and many many things to update about.  But I can't.  I can't because it just doesn't seem right to blog about all of the things going on in my childrens' lives when another special needs mother is grieving the loss of hers.  Please take a moment to read about Gavin and then take the time to help his mother by somehow paying it forward.  As for my updates, they will come later, when it feels right.

Doctors All Day

Today was long. Very very long. Anna's first appointment was at 10, the second at 2, and the third at 3. I hate doing the all day thing in Ft Worth but I hate going 3 separate times even more. Her first appointment was Ophthalmology. Nothing new there- she still has a lazy eye. She still has good correction and vision in said eye so no need for any intervention at this point. We will follow up in 6 months and if all is still stable we get to go to yearly visits. Yay! Then it was off to lunch and to the apple store for them to replace my phone. That's a whole other post. Then off to Neurology. I love Dr Hernandez. Anna has been having frequent seizures and we've been doing lots of med adjusting and labs. That will continue until we get it straightened out. She also has not been sleeping (even worse than normal) so if that doesn't get better soon we will up her sleeping meds also. Dr Hernandez said he knows we don't want her to be a zombie but that she has got to sleep. I'm totally ok with that. Then off to GI where surprise- Anna still isn't gaining enough weight. She's 97% for height and 50% for weight which puts her at less than 3% on the weight for height scale. We are too pack in more calories orally but if we can't we will increase her tube feeds. We are also adding more water to her feeding. She needs a bunch of labs and bone density/age studies because of the high dose PPIs (Prevacid, Nexium) for so many years. Those can leach calcium from the bones. So that's it in a nutshell. I know I'm tired because I can usually run circles around Kenneth and tonight I just can't keep up. Nighty night-

More Progress!

We are making progress, real progress! Anna was accepted into The Little Lighthouse. It is the special needs preschool I had posted about before.It is an amazing place and she is loving it. It is so much more of an appropriate placement for her than her public school pre k. I have a peace about it that I never really had about public school. Homeschooling her was going ok but I think some professional assistance plus therapy are the right direction for her. She goes for 5 hours 2 days a week and I think that is plenty. I think there are only 3 Little Lighthouse Preschools in the country and I feel so blessed to have one in my backyard. They only take 6 students at a time and for my daughter to be one of those six is such a privilege.

I was speaking with a lady at work that gave me a very interesting perspective that I had not ever considered. Her son has multiple disabilities and is in his early 20's. I was asking her a multitude of questions about raising him and about what went well, what didn't, and what she would do differently if she had it to do all over again. You always hear that you need to treat your special needs child just like your other child and never let them use their disability as a reason not to do something- it shouldn't ever be an excuse. She said they did that and they did it well. Too well in fact because when it came time to do things like drive he couldn't understand why he couldn't do it because he had always been told to not use his disability as a reason he couldn't do something. So she said you have to find a balance there. I had not ever considered that side of it. Anna will probably not ever drive and I am trying to accept that. Her seizures combined with her short term memory loss pretty much make it a no go. I'm trying to figure out how to make a disability not a disability but yet still a disability. I have not yet figured out how. I'll have to get back to you on that one.

Some freaky stomach virus is making its way through our house. If there's one thing Anna has not had to deal with this week it is constipation. Blessing in disguise? Um, I think not. Carly has had it the worst and I'm just waiting for Gave's explosion. I count us lucky though because stomach viruses rarely circulate through our home.

Homeschooling Carly is going well. We have done a bit of "unschooling" in the past few weeks as we adjust to my new work schedule. We are ditching the online program for a more traditional approach which requires more parental involvement. I'm actually glad about it because I want to be more involved with her. The "unschooling" days are days that we do things like cooking to work on math. It's basically kind of a life skills approach to learning. It's a nice break at times. I'm still certain this was and is the right thing for our family. We also are getting something monthly that a friend suggested called a kiwicrate. You can check it out at kiwicrate.com. It's this cute little box that arrives monthly with projects that kids can do mostly by themselves. It he box includes everything you need- even the scissors and glue. The kids were so excited to get a box with their names on it. In addition to an art project it also incorporates some other learning- like science or math.

We had our home visit with the MDCP nurse and case worker and all went well. We will know for 100% sure in about a month that Anna was accepted but were told they are sure she will be. We just have to wait for the paperwork to go through and then do this insane 1 night nursing home stay. Luckily one of the local nursing homes is familiar with the process which should make things easier. As we get further into the process I'll be sure to post a how to list. It cut our wait time from 8 years to 2 months to get Medicaid as a secondary insurance. We will always carry our own insurance through my work as primary. I hate having to use Medicaid but we really have no other option.

Yesterday Anna said "Mommy, I hungry. No, I seepy (sleepy)." Then boom, she hit the tile floor full force. It was over as soon as it started. I don't know if this is a new kind of seizure or if she blacked out or truly fell asleep standing up. I'm pretty sure I know the answer but I'll continue to reside in the land of denial until I talk to the neurologist hopefully tomorrow. Denial is ok. Right?

PS- morning reading time is the best and who wants to buy me some new mini blinds? One of Gabe's favorite pass times is to tear them up when we aren't looking.

Corn?

I'm posting from my phone- a first for me. This ability to post from the phone probably means more posts but also way more errors. Oh well, you can't have it all, right? So after about 6 weeks of working on the letter "A" I think she got it. She can usually recognize it and usually write it (she writes it upside down about 1/2 of the time but we are cool with that). So now we have moved on all the way to letter B. I've read that you should not move on to the next letter until you've mastered the previous one. At this rate we should complete the alphabet sometime around when I can get on AARP. But hey, progress is progress. Right? Somedays I feel like things are moving right along and some days I think beating my head against the wall would produce about the same results. So today we had been working on B for awhile. We had talked about it, colored it, cut it out, found it on a poster, made the letter b out of beans... We had worked that letter to death. Just as I think she's maybe about to get it I hand her another B picture with a certain B fruit on it and I ask her "what is this fruit that starts with a B?" She happily yells out, "Corn!" And such is learning with Anna. In happy news, the insurance has decided to pay. I don't know what changed their mind but I'm more thankful than I can even express for this. Also, through another SN mom I found out about a preschool for SN kids up to age 6 where they learn but also get ST, OT, and PT. And the best part? Even better than the fact that that preschool even exists? It's free. I'm so excited and can't wait to get Anna started. Maybe they have a solution to corn?