AFO's, Cheetos, and Big Macks

Wow!  It has been quite a week!  And we are only on Wednesday.  Last week I was kind of feeling a little bogged down.  It happens.  Life gets busy and sometimes you just want off the merry go round. Plus Cary Lynn and I were sick with that awful bug that is going around.  But the bug has passed for the most part and we are back to normal and moving through.

The last post I talked about our communication board.  Cary Lynn has been trying it out.  There is an upside and downside to it.  The upside is now she gets to make some basic choices and so far every time I have used it she has made a preferred choice.  I have also found out that I am raising a tomboy because every time I put the ball on the board no matter what the other choice is she always wants to pay ball.  I don't know whether to be thrilled that she has preferred toys or to be upset because I was really hoping for a dolly loving tea party playing little girl.  Sigh.  I guess I will just have to go find someone else to play dollies with:).

The downside is there is only so much Velcro in the universe and objects to put on the board.  Say Cary wants more or is finished with something.  That's a little hard to stick on an object board.  So we have limitations.  That is where the big mack comes in.  And no, I'm not talking about the golden arches.  I'm talking about a switch.  One of these:

We tried sign language with Cary Lynn and she does have a few signs down, but Cerebral Palsy has robbed her of the ability to have really fluent hand movement, plus limited vision makes it harder as well.  So we needed a new solution.  On this switch you can record things.  We recorded "I want more".  So when she wants more of something we have her press the switch.  This gives Cary Lynn a voice and empowers her.  It has been wonderful:).  I have never been happier to be interrupted with I want more.  We'll see how long that lasts:).

In other news we have been making progress putting weight on our legs.  I wish I had a picture of Cary Lynn while she is practicing standing but I am the one supporting her so I don't.  But I have a picture of what helps her out.

I have to admit that when her AFOs first came home I used every excuse not to put them on her.  I thought lets just stick a huge handicapped sign on her with blinking lights.  But lately I have come to realize that it really doesn't matter what others think.  My child NEEDS these.  They support her legs, giving her strength to bear weight.  These are the first of many that she will wear.  So the sooner I suck it up and deal with it the better she will be.  So we wear them.

Cary Lynn is also learning how to chew.  I know not really exciting for those of us who have mastered this years ago, but for her a milestone.  Back when we got her the GI's first sentence to me was, "Ready for that G-Tube?".  I told him where to stick it and that Cary Lynn would eat just like we do thank you very much.  He was doubtful and sometimes so was I, but now she is learning to chew food.  It happens very slowly, but it is happening.  Today at feeding clinic she chewed a Cheetos corn puff thing.  And a cookie.  So she is trying hard.

As we get closer to her second birthday I just can't get over how much she has changed.  From a child that by all accounts from her medical records say she shouldn't have lived she continues to defy and beat odds every day.  My daughter is amazing, stubborn, and wonderful.  I wouldn't have her any other way.

What we've been up to

Wow.  It has been a wild ride these past couple of weeks.  It seems like once Marvin goes back to school things get busier.  You would think with one kid at school and one at home that it would be soaps and bon bons around here.  But that is rarely the case.  First because I don't watch soaps, second because I am never home. 

Cary Lynn and I both caught the urgh these past couple of weeks.  Slightly above the argh.  We started out with sore throats, coughs, fatigue, and congestion.  Both of us are on week two and by all reports it is a three week deal.  So we are just slogging through it. 

Marvin is the only one to avoid it.  Which is good considering the little petri dish probably brought it home to us.  He has had a rough few weeks.  His sweet little kitten got run over on purpose and he has been missing little Tommy.  We all have.  I just can't figure out who gets their jollies over running over small animals.  So we have been giving him lots of extra love and attention.  He is starting to feel a little better and having Tommy's brother, Inky around helps. 

Marvin also went in for several hours of testing.  I spent time filling in the Doctor about my concerns and how I felt for years Marvin has not been getting the support he needs.  I filled out paperwork and the doctor expressed frustration over Marvin never getting preschool screenings.  He told me that he should have been screened years ago.  I was upset because frankly I didn't know my son could get them.  I was told over and over that he was "fine".  So now I feel like we have an amazing amount of groundwork to do.  The tests left me with even greater confusion.  Marvin doesn't recognize certain letters, numbers, and can't stay on task.  He has the fine motor skills of a three year old and the same frustration level.  Yet on some tests he was able to find the smallest details.  Like a missing fillament on a light bulb.  So his teacher got a list of questions to fill out and she sent them in as well.  Now we wait for about a week to get the results compiled.  It looks like we are facing a lot of remedial work, but the good news is that with lots of support Marvin will be able to be successful.  Whew.  That is a heavy burden off of my heart. 

Cary Lynn has also been busy.  We started outbound PT this week.  Early Intevention has been such a crappy experience for us.  I have talked to our support system at VCU and like them or hate them if you will, but they bent over backwards to get Cary the support she needed.  We now have PT, OT, and possibly speech through them.  They are concerned about her lack of progress and feel that she should have more support than EI can provide.  So we will still keep our vision therapist because we love her and I picked her out and fought for her, but we will probably kiss the rest of EI good-bye. 

We also went to Charlottesville to try a new eye doctor out.  That was a horrible experience.  Not only did he dismiss the CVI, he felt like it was pointless to do anything for Cary and basically blew us off.  I was enraged.  We are going back to VCU.  They may not know much about CVI, but are willing to work with us and lean.  Plus I am going up the totem pole.  There are so many unknowns about Cary's phase and her eyes that we are just going to the top dog.  Dr. Roman.  The woman who knows it inside, outside, and backwards.  It can take up to a year to get to see her, but it will be worth it. 

Plus, because I am not busy enough around here we have started working on a communication board.  Cary is hitting that pain in the butt magical age known as the terrible twos.  The things that used to make her happy now just tick her off.  She can't tell me what she wants and sign language is hard for her due to her Cerbral Palsy.  So my awesome vision therapist and speech came up with a plan.  It is very high tech ready for it? 

Ohhh.  All the cool kids have one.  So here is the idea.  Because of CVI most children until in a phase three cannot do pictures or one dimensional objects.  In fact most small children need "real" objects.  They have to understand what an apple is before you move to a picture.  So say it is playtime and I give Cary a choice between her two favorite items a ball or a book.  With a little Velcro magic viola! 

So she looks and chooses.  This does a couple of things.  It empowers her to make a choice, gives her immediate feedback, and saves me from having to listen to her have a fit.  So it is a win win.  Now I only have two objects.  Too many objects and she will not be able to "see" her choices and frankly, toddlers need limited choice anyway.  We are building this board with all sorts of stuff.  It has been fun to see what can be Velcro-ed around here. 

As for me I started a new class.  I am in Partners in Policy Making.  It has been amazing and mind blowing.  I could write a whole post on that and I probably will, but for now let me say that I am learning how to become an even stronger advocate for my children and have met people who are amazing. 

We are constantly going and I can feel fall in the air.  I am hoping to take some time this weekend just to relax and enjoy my family and drink some hot tea.  I want time to slow down just a little so I can breathe and just be.  There is time enough to change the world, but for now I want to snuggle with my two blessings and enjoy being their mommy.

My adoption journey

Adoption is a journey.  It starts with a life that wasn't planned for, wanted, or needed.  This life is passed from one family to the next.  It is a complex situation.  The life is expected to pick up a new identity, culture, and set of values.  For some it was like being born in France and shipped of to Iran.

For others, it is a gentle cycle.  Like it was just meant to be.  It was like nature made a mistake and corrected itself.

My children are adopted.  But so am I.  I was adopted at infancy and given to a couple who could not have children.  My name, Amy means beloved.  And I truly am.

I always felt that I fell into the latter category.  Nature corrected itself and I was placed with the right family. That was the end of the road.

When I learned more about adoption and reuniting with bio-families I was curious, but content where I was.  The only thing that mildly annoyed me was the fact that I had no medical records.  So I just decided that when it was time I would register on reunion boards and see what happens.

Years went by.  I got older and nothing happened.  I sort of put two and two together and figured that it was a bad situation, I was not going to get any answers, and that sometimes it is just a good idea to let things drop.  I erased all my info and just moved on.  I had two children in my home and a busy life.

But then something happened.  They found me.  I was getting ready for my son's play date when I got an e-mail.  It simply stated that this person may be my cousin.  I took one look at it and did what I normally do.  I freaked.  Luckily, Cary's aid was there and basically told me to stop over thinking it and answer the darn e-mail.

I took a breath, said a prayer, and I did.

By choosing this path I opened a new can of worms.  I learned about a pregnant scared teen who didn't know what to do.  I learned that my bio family was in a really bad situation and one baby changed them and gave them the strength to escape it.  I learned that even in the midst of bad things good takes place.

So now what's next?  Well I have a medical history so my doctor can keep a close eye on me for hereditary conditions.  I also have a new side to my family tree.  A cousin, an aunt, and a grandmother. I enjoy hearing from them and getting all the questions I didn't even know I had answered.  I feel like I now know where some of my quirks and the things that make me, well me come from.

But at the heart of it all and at the end of the day I am still Amy.  Still the daughter of two people from Colorado.  Still the big sister to one amazing sister in Colorado who gave me the bestest nephew and niece in the world.  My bio family gave me life, but my family gave me the strength to live it, the courage to try new things, and the joy in day to day life.

Both families have played some part in who I am and who I have become.  I am awed and blessed to be a part of both.  And I wouldn't have it any other way.



 

The way it is

Sometimes, well most of the time,  my life does not go as planned.

Recently is seems like everything has gone wrong.  Everything.

We got a stomach flu and had to cancel an amazing appointment at Kluge.  This was going to get Cary on the fast track to therapy services.  I have now been calling them for a solid week to reschedule and have been unable to get past voice mail.  Grrr.

Marvin is still not able to get in for educational testing.  They told me we would have him in by August.  It is now September and all I have been getting is the run around.  Marvin needs services and he can't get them without a proper diagnosis.  More Grrr.

Shannon had an auto accident.  Our car is toast.  We now have to figure out what to do with that.

I am supposed to be in church right now but Cary decided today was a good day to have a marathon puke fest.  She is on her third bath, I am on my third shower, and my washing machine is plotting my demise as I type this.

So I am really ready to throw my hands up in the air right about now.

But in life things happen.  Some people have been kind of like, God does not give us more than we can handle.  I read a great article on that one and the writer quipped that what the person is really saying is shut up and stop whining.  I did have to smile when I heard that.  

Sometimes life is not running through the meadows with chirping birds and singing daisies.  It is vomit, frustration, a bit of healthy fear, and more vomit.  It isn't easy, its darn hard.

But the moments of grace carry me.  Plus faith that things will turn out for the best. I know that the bad will pass.  It takes time.  And a really good hot water heater.