My Family

My Family

Thursday, June 20, 2013

Back in the Hospital

O.K.  The last 48+ hours have been kind of a blur but now while Cary is sleeping I will take some time to recap everything to catch people up to speed.  Plus I feel like I am repeating myself so many time I can just tell everyone to read my blog and you will be in the know:).

On Tuesday morning when I got Cary out of bed I noticed her toes on her foot were red, hot, and uncomfortable for her.  She had gotten a cut, but I had treated it diligently.  So I cancelled her speech and ran her to the doctor.  The nurse practitioner and other nurses clucked around her like mother hens, assured me she was a good little trooper, gave her a 500 dose of recefin in her leg and sent me home.  I felt a little uneasy, something just didn't seem right.  I kept an eye on her foot, we kept our PT appointment, and I just tried to tell myself that I was being too paranoid.  We were going back to the doctor's office tomorrow for a re-check so I figured it would look better.  Cary was acting normal so I tried mot to act all freaky like.

On Wednesday Cary's foot had not only stayed red, it had swollen and gotten huge blisters all over it.  O.K.  Now I started to panic a bit.  She has a high threshold of pain tolerance, but her foot was sore and she was wimpery and pulling her hair.  Signs of distress.

Where I used to work my old boss thought I could be a bit "dramatic" and my energy could be too "high" for her at times so she would tape posters all over the classroom that said things like I am an island of calm.  Though they annoyed me to no end, I did realize that children do feed off of you and Marvin would have a nervous breakdown if I was panicky.  So I took some breaths, called my rocking mother in law and decided that Marvin needed to spend the day there so I could get Cary back to the doctor.

Amber and I poked at Cary's foot and I took lots of pictures of it.  It was pretty nasty at that point.  I'm going to spare you guys and not put them on here.  You're welcome.

So we went back to the doctor's office where he hemmed and hawed about taking her to the hospital, which is where Amber and I wanted Cary to go.  He gave her a 750 dose of recefin and told us if she swelled anymore take her to the hospital.  By then my mommy radar was going off full force.  We got in the car and Amber and I said at the same time "We need to take her in."

So I went home, called my rocking mother in law who agreed to keep Marvin and packed up stuff and headed right for VCU/MCV.  We checked in around 3 to the pediatric er and by then Cary's foot had about tripled in size.  People came in and asked me what is wrong and I just pointed to her foot.  Reactions were generally horrified and grossed out.

In the midst of this Cary is cooing, laughing, and flirting with everyone.  She didn't even have the nerve to act sick:).  Crazy girl, but I was glad.  It seems that we caught it just in time.

So now you probably want to know what it is.  The doctors talked about MRSA, but I think that has been ruled out.  They are thinking it is cellulitus.  Which recifin does nothing for.  What they had do was cath her, bleed her, and then give her an iv of antibiotics that could reek havoc on her kidneys, but only one dose of that, like it is supposed to make me feel better about it.  By then I was pretty done.

But I would like to mention my awesome husband.  HE came in took one look at his wife who was falling apart and told me I was going home that night and he was staying with Cary as he does the night shift anyway.  I had already packed my bags anticipating a stay, but he put his foot down. So after we got Cary in a room and Shannon pried her off of me(she was asleep, but if you hold her when she is sleeping she attaches like a leech). We put her down, he marched me to my car and I went home.

When I got home at about 10 I realized that I had left the house looking like a tornado hit it.  I stayed up till about 12 worrying about Cary and cleaning.  Then I fell into bed, got up at about 4:30 and rushed back here.  Well tried to, every tractor in my town decided it was parade day or something and I got trapped.  Then tour de France wannabes came out in droves.  I tell you I really hate bicyclists on my road.  Find a trail or something.

So now I am back here.  Cary pooped twice last night and woke the dead.  Now she is sleeping.  On me as I type this.  Her foot is down some so the lethal drugs are working.  And I am hoping we can go home today.  As much as I love ads trying to save Wally the Washcloth (long story and this post is long enough as is) I want to take Cary and go home.  I want my son.  I want my husband.  I want my PJ's and a nice hot tub and a cup of herbal tea and a good book.  O.K.  I'm whining.  And as my husband points out in the grand scope of things this really is a minor hospital visit.  And it is.  But it still tanks.

But there is still good in all this mess.  We caught the infection in time.  I asked what would have happened if we didn't come in.  It would have been bad.  The doctor's and nurses are great.  They answer all my questions (I don't give them a choice they know me).  Cary's sweet nature wins over doctors and nurses who make excuses to come see her.  The prayers and calls we have gotten.  For a normally frazzled person, I felt pretty darn clam through most of this (not all mind you, but I am high strung and that is never going to change no matter how many posters you put up thank you very much), and my daughter who show me daily that she doesn't let these things slow her down.  She just keeps on keeping on. She shows me daily how to find happiness despite all that she goes through.  I am learning to take a page from her book and always find the joy in the midst of life's storms.

Wednesday, June 12, 2013

Odds and Ends

It has been crazy busy around here.  It always is, but with Marvin home for the summer and things really get busy!

I have built tents, played cars, slipped in school work, and started swimming lessons.  Not me, Marvin. They are not going to well.  HE is screaming and trying to claw the lifeguards eyes out in the pool so you get a nice picture of him playing in a tent.  

Plus, add to that all of Cary's appointments, therapies, and daily modifications that need to be made and it can be really crazy around here.

Back a few months ago when Cary came home to live with us I was with her.  All the time.  I was so scared something was going to happen to her.  When I brought groceries and stuff in the house I would carry her in one arm and the bags in another.  I brought her back and forth to the car with me terrified to leave her for one second where I could not see her.  She was so fragile and we had already come so close to loosing her once.

So the time passed.  I loved my family, but I spent most of my time with Cary.  Marvin had school so he was busy and Shannon worked, but I kind of felt I was loosing touch with them and the outside world in general.  The only people I saw were doctors and Cary's early intervention team.  When the PT noticed this she started asking questions.  She told me about personal attendants and the help they can give kids like Cary.  Most have medical backgrounds.  It is sort of like a babysitter with a nursing degree.

I resisted, of course.  I HATE asking for help.  You could come by and I would be hanging by a branch with a ring of fire under me and natives pointing spears at me and ask me how I am.  I would tell you fine I am enjoying the warmth, building upper body strength and learning about a new culture all at once.  You get the idea.  I will never openly admit to being weak or needing help.

Luckily, Cary's PT is pretty sharp.  She wore me out, which is what you basically have to do with me.  So I applied to the program.  And got an aid.  Her name is Amber.  She is funny, smart, and doesn't put up with my crap.  She also makes me leave my daughter.  I remember the first time I went grocery shopping without them.  Amber had been with us for about two weeks and I had yet to leave my daughter alone with the poor woman.  It was raining and Amber put her foot down.  She insisted that the rain isn't good for Cary and she really didn't want to watch me shop.  She then handed me my keys, purse, list, and phone, opened the door, smiled at me and told me to have fun.

So I did.  It wasn't an overnight process, but I did learn to leave my child.  Cary threw up all over Amber that day, but it was all OK.  Amber has been great.  I now have time for Marvin and Shannon. Plus when I go to doctor's appointments and have to take Cary's 10 million medical necessities with me Amber has come in handy.  I feel like I have a life again and it feels pretty darn good.

We also have been running around like crazy to Doctors.  It comes around every 3 months and we get slammed with appointments.  Cary went to the neurologist where she was pronounced a fine specimen of babyhood.  I bragged about how she is almost sitting, putting weight on her legs, and of course my darling angel refused to cooperate and acted like a limp rag the whole time.  Great.  The only amusing highlight of the visit was looking at the ads on the computer and the hot linen tip of the month.  I'm not kidding.  Apparently washcloth abuse is rampant at VCU and Wally the Washcloth is the linen spokesperson and asks that we all be considerate and not send them to the chutes of doom.  I could not stop laughing.  This stuff is just too stupid to make up.

Cary also continues to have PT, speech, and vision weekly.  We have a new speech and vision person.  I miss Becky, but I really like Ms. J.  She is awesome!  And I picked Ms. K.  Cary enjoys both of them.  When not trying to actively regurgitate on them.

We also have decided to add OT after an evaluation and we go to feeding clinic.  We have to wait for an OT slot, but we go to feeding clinic once a week.  It is a long trek, but well worth it.

Cary had an NG tube when she came to us, but she had the ability to eat.  Preemie preemies have a hard time learning to eat.  Plus she has other issues as well.  Cary has loads of GI issues.  All of which make it hard for her to be hungry or want food at times.  Until Cary I just assumed kids were giving their parent's problems and if they would enforce eating the kids would fall in line.  I am really surprised these parents didn't deck me.  But when a kid doesn't eat there could be a problem.  SO after eating major crow I set about learning a new way to get Cary to eat.

This is a corrective feeding device aka a hair dye bottle with tubing.  I call it a hamster bottle (they hate that at feeding clinic, but I call it that anyway).  The idea is that Cary learns to use her tongue and breaks the sucking pattern that you use with a bottle.  So we put food and drink in these.  We are trying to get Cary off of baby food and onto real food.  I have learned the way of the Jedi.  That's right, I have learned to puree.  You can really puree anything you put your mind to.  You start out with a mason jar filled with whatever you are going to fix.
I have bananas with apple juice.  All organic.  I place this onto my blender.  Yes, my blender.
Tah Dah!   I blend it up nice and smooth, Cary Can't do any chunks yet.  I puree it, strain it, put the puree into ice cube trays, freeze, pop out, and put into freezer bags.  Is it lots of work?  Yes, but I can boost calorie content and with Cary learning to eat new things it is expanding her horizons.  Plus, I can get organics and stuff that I grow from my garden.  Yum.

Another great thing about purees is that I can slip them into my unsuspecting husband's food (you are sworn to secrecy on this one!).  He is not a big veggie eater, but a little squash in the mac and cheese, a little green bean in this, he is none the wiser and I am able to slip something healthy into him.  Marvin has also benefited as he got really jealous when I was making Cary fruit smoothies.  He now sucks down healthy smoothies as well.  I am going to make pumpkin smoothies next week and I am really excited to see how they turn out.

So it is crazy, but I am loving it.  I still have laundry up to the ceiling some days, but I feel like I am finding my stride and not as incredibly overwhelmed as I once was.  I am learning to pace myself and take it one day at a time (most days:) ).  Life will always be crazy, but I wouldn't have it any other way.

Thursday, June 6, 2013

Cortical Vision Impairment and me

I had an amazing opportunity this past week.  I got to spend time at a Cortical Vision Impairment(CVI) convention.  It was three days of action packed learning.  I took notes, got a book, and tried not to be jealous that I didn't win glow eggs or Slinky's.  More on that later.

But I really wanted to take some time and share what I learned.  These things don't just have to be for CVI.  You may find use for them with your own SN kiddos.

But first before I start a disclaimer.  I am not a doctor.  I cannot diagnose or treat your kids.  This is advice.  You should always take your child to a doctor first.  Of which I am not one:).  I will however make house calls with home made baked goods (I am from the south after all), a chick flick (Crying is therapeutic), a beverage of your choice, and a shoulder to cry on and ears to listen.

So that being said here are some of the top things I took away from the conference.  The first was that you should get some books.  I would start with Little Bear Sees by Aubri Tallent, Andrei Tallent, and Fredy Bush.  It is sort of an ABC primer of CVI.  You can get it on an e-reader and I had it read in two days.  It gives ideas, tips, and hope.  After you have read that and feel like you have digested the info get Christine Roamn-Lantzy's book Cortical Visual Impairment:  An Approach to Assessment and Intervention.  This is the Harvard version of CVI.  I have had the book for a week and I am on Chapter 2.  Of course my son is out of school and every time I pick it up he has a splinter, tick, or is hanging from my curtains.  So I have a feeling I will be reading this until her new updated book comes out.  Yes she is updating her book.  No, I'm not sure when.  But I really feel that you need to read this one.  The book has forms and most important (to me) teaches you the scale.

Yes, there is a scale.  CVI kids are either phase 1,2, or 3.  The book teaches you how to scale your child and what activities are most important to do within each phase.  Children with CVI CAN IMPROVE!!!  But it is not magic.  It is work.  Hard work.  As a parent you need to learn to use the scale so you can help your child.  Plus, if you have others scaling your child they may be way off.  The good news is that everyone at the conference can scale pretty well so if any one of them came to see my daughter I would feel good about letting them scale her.

Now each phase has different things that you can do.  Phase one is the most basic phase and the child needs a controlled environment.  You want to train those eyes and brain to work.  Let me show you some of what I do with Cary.  This is the part that other SN families may like too because I feel that you can do some of this with other types of disabilities.

The first is a light box.  You can get one off of amazon, make them with ideas from pinterest, and if you have a cool vision person they can hook you up.  We place basic shapes in red, yellow, and blue.  Why?  Because those are colors Cary can see and she is a light gazer.  We spend time at the light box pretty much daily.

We also have a basket of objects Cary can see.  I keep it handy.  If your child sees red well, fill it up with pinwheels, balloons, Slinky's, red mardi gras beads, you get the idea.  Here is our box.  Surprise, guess what color Cary likes?

Inside the box we have all sorts of fun objects.  It is a little empty now (did I mention my son is at home;) ).  But you get the idea.  

One thing that kind of crushed me was books.  I am a teacher.  I say read read read.  But CVI stage 1 kids can't see pictures.  There are some exceptions, but pictures and faces are meaningless to them.  So the books I thought Cary loved are books she cannot see.  Does that mean we stop reading books?  Oh, heck no!  I still read them.  What Cary loves is the sound of my voice.  But I wanted more.  I remembered what I had learned that simple shiny or textured shapes would catch their eye.  So I made a book with chipboard and shiny paper.

Tah-dah!  Now I am not expecting any awards for this one, but it is simple, quick, and Cary bats at it every time I bring it out.  I also have re purposed furniture around my house.  I have a small home and space is a commodity.  So we have a main room.  Don't be afraid to be creative.  I took some old Cd's and taped them to a chest.  Shine a light on them and place one baby in front of it and you have hours of fun.  You can touch Cd's, kick them with your foot, and try to pull them off.

You also can get some really great double takes from visitors:).  Another favorite is Cary's "vision room".  I took a black tri-fold board that you can get at a craft store, stuck some tap lights and a black towel under my desk and viola!
Cary has a darkened sensory room.  It is really important for CVI kids to have a chance to focus on objects in a quiet area.  Dark with a few lights that highlight the activity you want them to focus on.

Another important thing is mirrors.  I have one I drag around.  The light and reflection attract Cary and she enjoys spending time in front of it.  Have a portable mirror.  Or buy one for every room.
Another great thing for CVI kids is an Ipad.  If you can get your hands on one of them and prop it up there are really great apps out there.  I got the list dejour from the convention.  Are you ready for some great apps? Some are geared for different generations but here is the list:
Baby Finger
I Glow Stick Pro
Bright Start
Baby Patterns
Infant Visual Stimulation
Big Bang Pictures
Rim Shot
Peek a Bouncer
Musical Hands
Guitar and Xylophone apps
Music Sparkles
Tappy Tunes
Rattle Drum
Bert's Bag
Talking Larry
Tap and See Zoo

Keep in mind that depending on your stage, age, and latency(how long it takes your child to look at an object) that not every app will be for your child.

If an Ipad isn't an option you could also use a lava lamp, or get a red beta fish, place in a clear bowl, and put it in front of a black area.  Another thing.  Wear black.  Get used to looking like the living dead.  You want the child to focus on the object you are presenting to them.  So if you wear a dark shirt or outfit the child will focus on the nice shiny object you are presenting.  Oh and don't talk a lot.  Silent presentation is the key.

So are you feeling overwhelmed yet?  I hope not.  These are just some things I took away.  Give your child an opportunity to work with their vision in your everyday routine.  Have fun with it.  If you are having fun and relaxed your child will be to.  It doesn't have to be perfect.  Children are very forgiving.

There is one more thing I want to share with you.  It is probably the most important thing.  All the people of the convention had fancy titles.  Like PT, OT, AT, Phd's and all that fancy stuff.  They were very proud of them.  But I trumped them all.  I have the most important title.  I am a MOM.  These people will come to your home tell you what to do, when to do it, who should do it, but at the end of the day they go home.  I live with my child.  I know what makes her laugh, cry, and the beat of her heart.  I am my child's advocate.  You are the most powerful person in YOUR child's life.   You are their voice, their advocate.  If you don't advocate in your child's best interest they can run you over.  Don't let them.  Stand up, speak up.  We need to advocate for our children until they are able to do so for themselves.

One more thing.  Always have hope. CVI is a new and changing field.  There are new breakthroughs every day.  Your child is a miracle and can live a happy life.  It may not have been the life you had planned for them, but are you living the life that your parent's planned for you?  Live your days in hope and don't ever give up.

Saturday, June 1, 2013

Happy Birthday Marvin!!

Yes, it's been awhile since I was here.  Sometimes life gets really busy and we have been swamped!  I have been on the run most days from morning to past my bedtime.  I have a ton of blogging catch up to do.  I want to do a post on my CVI training as well, but for this post I wanted to focus on my son.

My little boy.  When we first brought Marvin home he was a scared 18 month old who missed his foster family.  He cried, hid, and was scared of women because of the abuse he suffered.

This is my little guy.  About the only time I got a smile out of him in the first few weeks is when I let him play with my rabbit, Mr. P.

Well, the years have flown.  My little guy has done some big changing.  Here he is at his birthday party at our local berry farm.

Wow!  What happened to my baby???   Well, he grew up.  Time moves forward no matter what you do.  Marvin is now six.  He also celebrated another milestone as well.

My son graduated kindergarten.  Sniff.  He made a very successful transition from his Montessori program to the public one.  I was really worried about it.  But his teacher has been fantastic and she has put my mind at ease this year.

So what does Mr. Bigshot want to do next?  First grade.  But for the summer I am allowing him to have the gift of childhood.  With me staying at home we will work on the three rs but he has always either had to go to daycare or summer camps.  Last year was a real struggle.  He wanted a break so bad and resisted the camps, cried all the way to them, was bullied by another kid at them, and was toast.  So this summer unless he asks for a camp he will not go.  We are doing swimming lessons, nature field trips, parks, gymnastics, reading, and sitting on the sofa in our Pj's if we darn well feel like it!  Plus play dates.  Marvin has already requested several.  So we are set.

It has been an amazing journey.  Looking back at how hard it was to adopt and finding out we were getting a little one seems so long ago.  Marvin has been amazing.  I can't hardly remember life without him and I don't want to try.  He is my heart and brings so much laughter and life into our home.  I am blessed.  Happy Birthday Marvin!