"Weighty" matters

I know I know.  Bad blogger where art thy posts?

I wish I had some really good excuses, like I caught on fire or something like that, but I don't.  I do have a cold thanks to my wonderful hubby but that has really not impeded me except in the breathing  department when I try to sleep at night.

It has been an eventful few weeks so I will try to catch you all up to speed.

First, I have been fighting with the IFSP dragons, otherwise know as early intervention.  We are do for a rewrite and since I went off and reported my agency as non compliant I have had a much easier time of getting things done.  They are still being screwy, but a lot less so and they return my calls much quicker too:).

We did have to say good-bye to one of our therapists.  So I am going to use a name and picture of her.  When Becky came to our home for the first time I was a little (OK a lot) intimidated by her.  She was brisk, businesslike, and didn't take much nonsense.  She also challenged me to believe that my child was capable, can do things, and flat out insisted that Cary give 110% every time.  Cary tried her best to avoid her, poop on her, throw up on her, and sleep through her.  As you can see, Becky won in the end.

Here they are.  Becky is making her push a ball and you'd think we were trying to kill her the way she goes on and on about it.

So Becky is leaving.  A new speech person, J, is in are area and closer.  But we have a small snag with that.  You see, I really only have two days a week for therapies unless well notified in advance.  But J just figured I would magically change my schedule since it wouldn't work for her.  Unfortunately, she has picked the one day I can't change at all.  So we will see how this one turns out.  I am holding strong and hope we can come to a peaceful resolution on this one.  

We also added a new member to team Cary.  We have an all inclusive therapist!  Yay!!   This one I cherry picked.  I knew her before hand and she has taken over my old vision person's post.  Cary loves her and so do I.  She is calming, fun, and has given me more good ideas in the past three visits than our old vision person in the whole months that we had her.  Hooray!!  Plus Cary threw up all over the place visit two and she still came back.  Which is great, because my kid makes puking an Olympic sport!

Cary seems to be thriving in all areas but one.  Her weight.  For the last three months Cary has been 18.3 ounces.  For me, it was not a big deal.  She eats.  She is taking solids again.  So I was good with that.  Plus her bio family is tiny.  Bio mom is about 3 pounds soaking wet.  Really.  And short.  So is bio dad.  They make me want to go eat a pack of cupcakes.

So when we went to weigh in I was really thrown for a loop.  The doctors came in and were not pleased.  Cary has dropped 2 percent tiles and has not grown enough to suit them.  They gave her a new title that day.  Failure to thrive.

I was ready to cry.  I mean really.  My child IS thriving.  Just in her own way.  I tried once again to explain genetic and her slow growth hormones.  Because like it or not, those are a factor.  They really didn't want to listen.  So I asked a question.  How much do you want her to weigh?  They couldn't answer that either.  But she should have gained.  So I asked for ideas.  I swear there were crickets chirping in this person's brain.

So I decided that I was an intelligent person and could figure this out.  So I went home, made calls, googled (I don't know how I ever found anything out before google!) and posted on forums.  Within 15 minutes I had 9 pages of recipes guaranteed to make you fat looking at them, products natural and unnatural, and three people offering to call the hospital and scream at them or offer a free eye exam because a child with a double chin is anything but wasted.

So operation beef up baby has begun.  I am aiming for about 3-4 pounds on her.  We have tried some new things.  Some she has loved.  Nothing like chocolate powder in pediasure to fatten up the baby.  Some she has tolerated.  Grape seed oil and a little heavy whipping cream boost fat in baby food and in my opinion make it taste better.  Cary begs to differ.  And some she just throws up.  Cream of wheat is not a hit and makes her gag reflex kick in full force!

She has a delicate tummy and even though everyone tells me she needs to go on pureed table food and I want her to as well, she is just not ready for a lot of it yet.  She has really only been eating baby food for a couple of months and her little tummy needs time.  But time is also the enemy and is working against us.

So we continue to work on eating, growing, and learning that balls can be fun.  She has come so far and beaten so many odds that I know we can overcome this too!

Can she or can't she?

So when you have a child with special needs or any child for that matter things are never black and white.  Ever.  It would be so nice if kids came with their own instruction books.  I notice the only instruction books are written by grownups.  Although I am sure they were children once, a good majority haven't had kids of their own.  Or there would be chapters titled "Why is there Jelly Toast behind my Toilet?"  or "What does it mean when my child runs around with a plunger on his head declaring that he is a toaster?"  True stories from my world.

But sometimes you just have to muddle through and hide your plungers.  So we do that.  We recently have been muddling through Cary's hearing.  We had done all sorts of tests and everything pointed to hearing loss.  So when we went for her ABR yesterday I fully expected to be told of loss.  It was a big enough deal that my husband took the day of of work and we were all braced for the worst.

So we get to the office and I am informed that my daughter must take a nap now.  Cary had other ideas.  She had no intention of sleeping whatsoever and promptly blew raspberries everywhere.  Then she worked on rolling.  She has done it once and is determined to do it again.  I told the nurse that I had been informed that she could be awake and quiet during the study.  The nurse did not appreciate my input on the matter.

So I decided we would get her down even if it killed us.  It almost did.  A determined little person against three grownups.  It took lots of back rubs, foot squeezing and my husband making sure that the stinking nurse stopped coming into the room every 20 minutes to see if she was asleep.  I wish I had gotten a picture, but I was afraid to wake her up.

So once she is out you could run a marching band through the room and Cary wouldn't budge.  We called the nurse back in and she hooked Cary up and started running tests.  At first everything seemed fine and was going OK.  But the tester wasn't pleased.  She kept looking at the results and running the tests again.  I was getting really upset.  I kept thinking what bad news this is going to be.

Then she was done.  And she had a smile on her face.  "Well, it looks like she is in pretty good shape. Her tests look pretty good."  What????  So I wanted to know what was going on.  The Dr. told me that when the original tests were done Cary was in the middle of ear infections.  She may have had them before we caught on that her ears were infected.  Which would muddle results.  Her hearing is pretty decent.  There may be a little loss and there is damage, but that is because of brain trauma.  We won't know until she gets older.  The doctor doesn't know why and says that Cary has yet to follow any "standard patterns."

By that they simply mean that Cary continues to defy the odds.  She was supposed to die early.  Everyone knew it.  She nearly did a couple of times.  But she lived.  Then she was supposed to be stuck in foster care limbo.  No one wanted the burden of that kind of child.  But now she has a home and family.  She was supposed to be unable to eat and swallow.  But she can and does.  I could write a book on everything Cary is not supposed to be able to do.  But she does it and continues to bust down preconceived notions and low expectations.

Cary is strong.  She is a survivor.  And she has people who love her, care for her, and push her to do new things.  She is feisty and knows that she has people in her corner.  So she continues to defy odds.

So can she hear?  The technical answer is yes.  She may have a loss, but until she gets older we can't be sure.  So we will continue to push and pull and defy the odds.  My daughter rocks it and loves to prove the world wrong.  That's the way it should be.

Just a normal week

No, I have not dropped off the face of the earth.  I did however, take a little bit of time away.  My son had spring break and except for Speech and  PT we had a really normal week.

I had decided that I was going to keep this week uncluttered as much as I could.  I wanted to just live the week like I didn't have medically needy kids.  That we just went and did things that everyone else did.  Just for a little while.

So we did.  We still saw Speech and PT, but that was only a little bit of what we did.  We had a such a good time.  And just for a minute, for a space in time I didn't think about blindness, doctor's appointments, shunts, and adaptive living skills.  I thought about picnics, walks, swings, and fluffy creatures.

WARNING:  Mom, if you are reading this you are not going to be happy about this next part.

See that grey bundle of trouble my son is holding?  His name is Thomas.   We went to Arvonia and picked him up this week.  He is a 4H project and a new "friend" for Penelope.  He is getting his "big boy" surgery today so he may not be as friendly anymore.  I am O.K. with that.

To see the look on my son's face made the long drive to the end of the earth. O.K.  Marvin has been cleaning poop, training Thomas, and feeding him.  I am not expecting that to last foreven, but so far so good.

We also went to Maymont.  Marvin climbed, ran, jumped, skipped, and wore us ragged.  Cary did this:

All day.  Through all of Maymont.  And she got a sunburn to boot.  But it was great.  It was nice to be normal and do normal things.

This week, we go back to our normal.  We have appointments, new battles to fight, and never ending stuff that special needs kids need.  But I am holding on to our week, our time together, and most of all the normalness that made it so magical.

Getting the Help We Need

I can honestly say I don't even know how to write this post.  It is not like it is top secret and I've vowed to be honest in all my blogging, but this one leaves me a bit uncomfortable.  It shows that I am not super mom.

Let me back up a bit.  It started several moths ago.  Cary and I were working with her PT and she started asking me about my last job.  I got all teary because I truly truly missed it.  Then she started asking about my getting out.  Huh?  What is that?  O.K.  she said, how about reading a book or doing your hobbies?  When do you spend time with your son and husband?  I was getting annoyed and asked if this was 20 questions or something.  After all, Cary needed me.  She didn't have anyone and she needed me.  Very quietly the PT said, "Others need you to.  You will burn out and loose touch with who you are and your purpose and the people you love will drift away from you."  Well that didn't sound super appealing so I asked her what I was supposed to do, ship Cary off?

PT suggested a medical aid for Cary.  She said that Cary has and will have great needs all her life.  A medical aid could come to your home, help you take Cary to appointments, and give you some time for your family and yourself.  I briefly toyed with the idea, but dismissed it.  I could handle this.  I didn't need a life.

Flash forward about a month later.  I am at the GI doctors.  It is pouring rain and I have to park a long way away from the door.  I have to take Cary, her giant binder o' medical records, her diaper bag, her medical equipment for a check, extra blankets, and my purse.  I not only could not carry it all in at once we were all soaked to the skin by the time I had managed it.  I remembered the conversation with PT and thought, "Gee, I could have pulled up to the door, someone could have unloaded Cary and her stuff and took her in instead of us both looking like drowned rats and sneezing and shivering."

So when PT came I took a breath and asked for help.  She smiled and gave me a hug and some numbers.  I wish I could say that was when everything magically fell into place.  But it took some more time.  It took more people coming to my home and declaring my daughter handicapped, it took paper work, and then more people and paperwork.  But soon things fell into place and I was told I could seek help.

But by then things had calmed down some and I thought maybe I could do it.  But soon Cary had more medical complications present.  Then I noticed that I was tired at the end of the day.  After you spend hours doing therapies, feeding, going to doctors, and just trying to keep up with all of Cary's records your day is shot.  I was tired, irritable, and just didn't have energy for Marvin or Shannon.  All I wanted to do was sleep.  Weekends were easier because Shannon was home and I got help and a reprieve.  So I caved.  I decided that I would give it a try.

So I started looking.  It was hard.  This stranger would come into my home.  I felt really weird about it.  But then I reminded myself that having help would make my life better.  Heck, I might even remember what a life was.  Then I met her.  Our new aid.

She came on a cold night.  She sat in our living room and in minutes we were talking and laughing like we knew each other for a long time.  So I hired her (after I ran through her references with a fine tooth comb).  She has been here for a week and it has been pretty good so far.

I had several doctor appointments this week.  She hauled stuff for me.  It felt weird just taking Cary in a stroller with nothing extra.  She helped me bounce Cary when she was fussy, which was alot this week.  She sat in on therapies and fed Cary.  She played and worked with Cary.  At first it was kind of weird, but as I cleaned my house and did paperwork it felt kind of nice too.  I wasn't worried that Cary was breathing funny, choking, or getting hurt.  I even went grocery shopping all by myself.  It is hard hauling Cary's extra stuff and it can take up cart space.  Today my cart was filled with food.

I also felt funny about taking her to my appointments, like they would think that I was a bad mommy because I couldn't do it alone.  But the doctors have been very excited about her.  One said that she had wanted to say something because she saw me struggling with all of Cary's stuff, but she was worried I would have taken it wrong.  All of them have stated that Cary is a medically complex and fragile child.  The more people to love and work with her the better her chances are.

So I am not superhuman.  I am me.  I am the best me that I can be.  For this season in our lives Cary needs more and I need to provide her with it.  Her medical needs continue to change and it seems like we find more problems lately than solutions.  So I am accepting that I can't do it all alone anymore.  Not easy for a control freak like myself.

But this week was an eye opener.  I spent more time with Shannon and Marvin.  I feel less tired. I am getting things done around the house so it doesn't appear on an episode of Hoarders.  I am starting to feel more like me again.  Ironically, in giving up control and accepting help I actually have more control of how things are going in my life.  And that is a pretty good feeling.

More Doctors!

Boy,  I just find myself lying awake at night thinking, I just don't take Cary to enough doctors.  Where else can I take her?  What else can I do to my child?

I sometimes think that I live at VCU/MCV.  I mean, the guys at Au Bon Pan and Einstein's Bagel know me and Cary.  They even know Marvin.  I am starting to recognize my favorite valet person.  The one who actually helps me!  I look for her!  Geez, it feels pretty pathetic at times.

But in a way it is good.  They know me.  They know Cary's story. They cheer me on and cheer me up.

So after Cary's hearing results we went to the ENT.  That was a doctor I had hoped not to have to see.  The guy was nice, looked in her ears and proclaimed no fluid or infections.  We chatted about how kids are and what an awful season this was.  I then handed him the information I had gotten from the VSDB.  I had some pretty cool charts and a nice e-mail from the person who did the testing.  The doctor reads the info and the smiling stops.  He looks concerned.  He immediately leaves the room to get the audiologist.

Not only does the audiologist come back, but so does the doctor and another doctor.  They are nice and start asking lots of questions and frowning at the chart.  I have found that frowning is not a good thing.  So I start plowing head on.  I ask for more testing.  I ask for options.  Then in a tiny voice I ask, "Will my baby be O.K.?"  No one can answer that.  The room is silent.

Funny how she has a shunt which her neurosurgeon delights in telling me that it will fail, I have a neurologist who tells me my kid may have problems walking and talking, opthomologists who tell me that vision will be an issue, and a GI doctor who put my child on pediasure because of thriving issues,  an endocrinologist who has me watching pee pee diapers like a hawk, and this is what unglued me.

They are reassuring and tell me that we are going to try testing and a ABR.  This link tells you a bit about   ABR testing.  It is not the best link I found, but simple.  Trust me when I say my child will not be that happy and relaxed as the one in the picture.  We go on the 25th.  Since they do not want to sedate Cary, due to all her complications, I have to plan on spending the day there and hope she cooperates and takes a nap.  Hahaha.  I told them she stayed up all night at the seizure watch.  Good luck on that one.

They also told me that we may be looking at hearing aids.  I am not thrilled about it, but if that is what she needs to hear then I will roll with it.  I have been assured that I have a wonderful team waiting for us.  I can honestly say I am tired of teams.  I sometimes wish that we only had a pediatrician and that I could wave my wand and make this all go away.  But if it all went away Cary would go with it and I don't want that.  She is resilient and brave.  I will just have to suck it up and follow her lead.

I have a lot more I could blog about.  We are finally getting somewhere in dumping our vision person, Cary is having all sorts of new unfun  GI issues, and I am getting a medical helper.  Wow!  My life is never dull.  But right now we are having rare "normal" moments and I want to enjoy them.  Lately, they have been far and few between.  Its a crazy life, but at the end of the day, I wouldn't have it any other way.

Power of Play

Just so you don't think that I have spent all this time down in the dumps, I will have you know we are off to a much better week.  True, we are expecting snow.  The weather people keep changing their minds.  So far it is somewhere between lots of rain and we will be buried till the end of time.  Or at least March.  I have lots of doctor's appointments to go to so I will strap some skis on the car and call it good.

I am in the middle of fighting my IFSP plan and life trudging on.  But I wanted to take time to post about well, play.  From all that moaning and groaning I did at my last post people were curious about toys.  Plus, I posted on Facebook about it as well.

I am a big believer in play.  Play is how children make sense of their world and create, imagine and move.  I am a big time follower of Lisa Murphy, the ooey gooey lady.  If you go to her website ooeygooey.com you will find all sorts of really neat ideas, books, discussions.  My favorite is her house of higher learning.

You wouldn't build a house without a firm foundation, would you?  Play is the strong foundation that  cements the child's brain for higher activities.  As a teacher I can always tell what kids watch lots of TV and what kids have lots of time to play.  It shows.

As a mom with two special needs kiddos play is critical to their development.  We use play with Marvin to help him develop expressive vocabulary, act out situations that may lead to stimulation overload, and help empower him to make the right choice.  Recently there was a fire and a family lost everything.  After hearing about it in church Marvin pretended to be a firefighter and "save" them.  This helped him feel powerful in an otherwise scary situation and I used it to roll play as well.  I pretended that I needed saving and we brainstormed on what we could do if it was our house.  I used the boundaries of play to help establish a fire escape plan in our home if that should ever happen.   WE have done this many times and I was able to present this idea in a nonthreatening way.

As for Cary, as she grows play is something that she is starting to enjoy.  We play peek-a-boo, sing nursery rhymes, and bounce on my knee.  All the normal stuff.

When we first got her Cary was not overly interested in toys.  I was the toy she liked best.  In the past month or so that has changed.  It started with me tripping over one of her sound toys.  It made a noise and she lit up and laughed.  I was super excited and pushed the toy close to her.  That was when the problems presented.

First the main two problems are that Cary's hands are often balled up, like this.

Not the best pic, but most of the time her hands are curled up in a fist.  There are three possible reasons for this.  1.  Blind newborn preemies do this and it is very common.  2.  She has Cerebral Palsy and it is very common.  3.  She likes to keep us guessing and is secretly laughing at our stupidity.

Anyway, whatever the reason it makes it hard for grasping and flat palm touching.  The other problem is her touch.  I submit exhibit A for your examination.

Nice toy right?  Perfect for little ones?  Ahhh, but examine the toy from Cary's perspective.  Cary can't grasp things yet so she can't manipulate the pieces.  Not a huge deal.  She also cannot sit on her own.  Still not the end of the world you say.  Cary touch is as light as a butterfly landing on your arm.  So it takes some pressure to push Mr. Star down and make him sing and light up.  Cary does not have that skill yet.  So since the toy can't grab her attention and teach the cause and effect and problem solving it is only good for a paperweight in our house.

So being a Montessori teacher and taking pride in my skills to adapt things I started looking around to see what I could do.  With a few simple tools.......

.......I was able to adapt (and break, it's a learning curve here) a few toys.  So this is one that a few hammer strokes loosened up things and it now responds to fairly easy touches.   We also find things that are not typical toys and put them to use.

What do broken beads and sad dollar store Christmas objects have to do with play.  Not much on my chair, but when you drill some holes in a bucket and hang them from the doorway.....

.....you have a really fun toy that bounces noise around if you shine a flashlight on objects it gives something to bat at.

There are some downsides with adapting toys.  One, you can break them and render them useless.  Two, you have to be careful because these can be unsafe for your little one if they are not supervised closely.

So I walk a fine balance.  I use things, make things, and destroy modify things.  I am also always on the lookout for affordable adaptive toys.  We have some minor luck.  I have found some very affordable books in braille from seedlings catalog.  I am also saving money for their braille ABC blocks.  Even though Cary is not grasping much yet she is taking small steps in that direction.  I would love to get her these blocks as blocks are great for open ended play.

I also find myself lusting after some pretty neat toys from the Enabling Devices catalog.  Some of the stuff I could make myself or even buy cheaper elsewhere, but there are some toys that would be fantastic.  Like this one.

It's called the Textured Carousel Busy Box.  It has all the bells and whistles.  It responds to light touch, has bright colors, and textural interest.  It would be awesome.  But what is not awesome.  The price tag.  This bad boy is $236.00.  Ouch.

When we got Cary we went to a one family income.  We were never rolling in the dough, but even less now.  There are some pretty nice toys in here that I will only end up dreaming about.

It kinda makes me mad too.  Why should adaptive toys cost so much??  I understand they are not for your everyday child, but don't our kids deserve to have toys to play with as well?  I believe that they need play just as much if not more so than an everyday child.  Play makes therapies more bearable, gives them a chance to strengthen weak areas of development, and most importantly, when we play we are all equals.  This gives my children a chance to be like your children.  And that is important.  The most important thing of all.

On that note, I have some playing to do with my rocking kids!  And a soapbox to put away:).

Crappy Week

This last week has tanked.  In a big way.  It seemed like life waited and dumped all the crap it could on me at once.

We started out last Sunday with Cary feeling crummy.  She has a pretty high pain threshold but something was off she cried and wailed and I ended up having to rush her home from church and Sunday school.  After a big dose of ibuprofen we made it though the day.  She had a rocky night and I rushed her to the doctor to find out that her ear infection is still there.  We started round two of antibiotics.  I also had to cancel her therapies for the week.  Cary was just too sick and unhappy.  Rare for my little one.

We made it through Tuesday and she seemed to be rebounding so I decided to keep her hearing testing on track.  We went down to Staunton on Wednesday to do another round of tests.  The results weren't good.  We are looking at hearing loss.  How much we don't know.  We also are unsure if it is because of her infections or if it is more sinister.  I got to the car with her and cried.

On Thursday we went back to the pediatrician to find out that the antibiotics aren't doing anything and her infection is still there.  We go back this week to see what to do next.  I also made an appointment for ANOTHER specialist.  An ent and an audiologist.  Fun fun fun.

I also found out Cary needs some adaptive toys to help her out. Adaptive toys are not cheap.  I no longer am employed and we live off of one income.  These toys would help her out with her development, but the cost is unreal.

Cary has also been refusing solids.  I have to put them in her bottle to get them down her at all.

To end the week Marvin and I got some sort of GI bug that has had us feeling not great.  I will spare you the details.  You're welcome.

Like the proverbial toddler I just want to met down and have a tantrum and throw things.  Scream.  I understand that things will not always go great, but really?  All at once?  It is so frustrating and feels very overwhelming.

There have been a few bright spots that have make this week somewhat livable..  We have a great team at VCU who moved heaven and earth to get me in soon.  When I posted on my facebook page about needing adaptive toys friends came forward with suggestions that I am following through on.  We got to a fish fry and be with friends.  True I didn't win a quilt I had my eye on but I got a funky new piece of furniture at the action.  I am still deciding what it is going to be.  Long story, did I mention it was unusual?

This week begins a little calmer, but I don't expect it to stay that way for long.  We have had a bunch of changes and early intervention is out of compliance with my IFSP.  I expect it to get ugly with my vision provider and the head office.  I will be calling for a meeting and an overhaul my IFSP.  Oh joy.

We are also expecting snow.  Not that that is a bad thing, but I am kind of ready for spring.  I am tired of sick children.  Ready to be outside a bit more.

I know things will get better and that these things will pass, but I am impatient and want them done now!

Life goes in cycles.  There are good ones and bad ones.  We are just stuck on a bad one now.  I march on through this, grimly determined to see it through and ready and waiting for a good cycle.