Tuesday, November 27, 2012

Emmett's progress

Here are some pictures of Emmett's head when he was four months old.  These were taken on our first visit with his occupational therapist.

These pictures were taken at 6 months after all of the therapies described in my earlier post.

Because of the bossing on Emmett's forehead and some malformation that is still present we have decided to put Emmett in a helmet.  He got it today.
This is Greg.  He is the man that will be monitoring Emmett's progress in the helmet.  

Dealing with Torticollis

My son Emmett was born in May 2012.  By the first week of June I started to notice that he would only look to the right when I laid him down to nap.  By the middle of June he would only look to the right all the time. It was about that time that I started to notice that his forehead looked pushed forward a bit.  I asked the pediatrician about it and he said that some shifting was normal and not to worry about it.  

On July 16, 2012, Emmett had his two month check up.  I was more adamant this time that the doctor listen to me and I told him that Emmett was only looking to the right, his forehead didn't look right and when you hold his body up he curled to the side.  This time he listened and did some x-rays.  At that time he was diagnosed him with Torticollis and Infantile idiopathic scoliosis.  

On July 26th I met with a director at Up to 3 and went over Emmett's problems.  She agreed that he needed to see a physical therapist to help with the torticollis.  I first met with him on August 2nd.  He showed me some simple things to do with Emmett such as placing him on his side supported by rice bags, along with trying to get his attention on the left side.  I worked on doing those things until our next appointment which was on August 23rd.  

At our appointment on August 23rd, the physical therapist said that he thought the therapy was working but he was noticing some malformation in his head as well and he referred me to Pediatric Rehab.  to look into getting a helmet for Emmett.

I met with a physical therapist at pediatric rehab on August 30th where he evaluated Emmett for two hours.  He said that he could see a lot of asymmetry in Emmett and he felt that he wasn't as comfortable working with a small baby, so he referred me to an occupational therapist in the same office.  

In September, I had two visits with the physical therapist from Up to 3, and I continued to do the exercises and placing that he showed me.  I also met with the O.T.  for another two hour evaluation and two follow up visits to talk about stretching and placing as well.  

At home with Emmett we work on chin tucking, rolling, stretching, placing, sitting up, and tummy time.  I have limited his time in a car seat, bouncer, swing, etc.  I make sure to spend lots of time playing with him on the floor and I try to lay him down on his left side for naps and bedtime.  

Through all of our efforts Emmett has improved a great deal.  Stay tuned for pictures of his amazing progress.

Wednesday, November 21, 2012

Grown up time-out

I had one of those moments today that I have seen in movies several times.  The one where the main character is seen throwing a huge tantrum or doing something else only a crazy person would do and then it goes to freeze frame and the rest of the movie shows you the events leading up to the tantrum.

While my life did not freeze frame this afternoon, I did find myself standing in the driveway screaming at my husband that my only wish in the whole world is to take a shower without everything falling apart.  I believe my parting words before I got in the car and drove too fast to the grocery store were, "I just want to be able to put pants on in the morning!"

By the time I reached the grocery store I realized how insane I was acting.  I sat in the car and thought to myself, "My goodness, how did I get this nuts?  I'm not this person."

Anyone else been there?  I'm going to guess that I am not in this boat alone.

I don't think it matters what is going on in your life that gets you to that place.  Whether it's kids, work, holidays...whatever is causing the stress, when you find yourself in the driveway screaming, it might be time for a time-out.

Here are some simple suggestions for a quick grown up time out that might help give you a boost. This is in no way professional advice.  Just simple things that have worked for me in my many times of need.

  • Hide in the closet and call your mom for a five minute pep talk.

  • Paint your toe nails.

  • Read for five minutes.

  • Sneak a piece of chocolate that you have hidden in the cupboard.  If you don't have any, it might be an emergency situation and you should immediately call for back up.

  • Plan to go out with girl friends,  even if the actual getting together is a few days off, just setting it up and having it to look forward to might be enough in a moment of crisis.  

  • Remember to breathe.  

  • Start singing out loud.  My singing seems to be unbearable to my kids and makes them crazy...which on some occasions is exactly what makes me feel better in a slightly evil kind of way.

  • Call your husband or girl friend or someone close and explain that you just need to vent a minute.  I have yelled and screamed at my husband so many times when he just says "I love you" and we hang up and I feel much better.

  • Most importantly...and this is serious...if you ever feel so crazy that you might hurt yourself or your kids, call for help.  It is NOT a sign of weakness to admit that you are overwhelmed and need a break.  It is a sign of STRENGTH to call for back up when it gets to be too much.  

To recap, when I got home from the store, I was breathing normally and speaking in a much more pleasant tone.  Taking a break was just what I needed to dig in and carry on.  I still have a million things to do that aren't getting done because my kids are out of control today...but tomorrow will come, and they have to sleep sometime!!!

Thursday, November 15, 2012

Middle of the lake

I have always heard that having your third baby is the hardest.  I have found this to be true.  Not that Emmett is a hard baby, he is wonderful, its just hard to have three.

I now have more kids than parents in the family.

I have more kids than hands.

I have more kids than will comfortably fit in a sedan.

I apparently have more kids than my brain can handle.

Emmett is six months old today.  For the first four months of his life I felt like I was drowning in a way.  I was overwhelmed with appointments, therapies, play groups, homework, teacher conferences, dishes, laundry, cooking, showering....it seems as if the things that used to just come naturally were taking a lot more effort to figure out.

With some help from trusted friends and family, I have spent the last two months working on 'baling out' if you will.  I cut out a lot of stress in my life.  I have cut down to basics...and started showering again.

For the last three weeks or so I have been feeling so much better.  I feel like I can breathe again.  I have been able to enjoy my kids and feel like a real person again.

Now comes the tricky part.

Instead of drowning out in the middle of the lake, I have baled out, I am no longer sinking.  I am back above water.....but I'm still in the middle of the lake.  Doesn't a person need to have the joys and comforts of land as well as playing in the water?

Now it is time to figure out how much to add back in.  I must not get over excited and overdo it.  I might sink again if I'm not careful.  I've never felt so fragile in my life.  

The way I see it, I have a great opportunity.  I was lost, I forgot who I was.  I let myself be consumed.  Now I get to reinvent.  I get to figure out who I am and what I require to feel good.  With a paddle in my hand I am ready to get started and make my way to shore.

Heres to new beginnings.

Sunday, November 11, 2012

Accelerated Reader

The day has finally arrived!!  My son enjoys reading!!  Isaac is in third grade now.  When he went into kindergarten, he was diagnosed with Aspergers.  Academically, he was right there with the class, but had some developmental delays going on.  When he went into first grade he was a little behind, but starting to catch up.  Going into second grade he was still at a Pre-K reading level. At his annual IEP meeting, where we get to sit down with his principal and teachers to figure out the areas he could use some extra help, we all decided that reading was a must.

Up until that point his teachers kept telling me that if I would find him material he was interested in, he would start reading.  Well, it is difficult to find gripping first grade level material for a child who has been watching documentaries on the discovery channel since he was three!

So, here is my plug for individualized attention for special needs kids at school.  I have heard other moms with special needs kids say that they don't want their kids to go into resource.  Here are some of the reasons they give:

  •  They will learn worse behaviors from the other kids than they already have.
  •  Other kids will make fun of them for having to go to a different classroom.
  •  They don't need to go to the 'special class'.

While I see that these are valid concerns, and admittedly I have worried about each one myself, resource for us has been such a blessing and here is why:

  •  Isaac has learned how to make friends by working in a smaller classroom setting.
  •  I know the principal very well now and I am confident that if there were bullying problems, they would be resolved quickly.
  • Without resource I really don't see how Isaac could have gone from a Pre-K reading level to a 4th Grade reading level in one year!!
Isaac has now tested out of resource for the time being.  He is back in a main stream classroom, feeling good about himself and reading like a madman!!  I have to go down to his room and make sure his light is off so he will go to sleep or he would read all night!  I love it!  

I would strongly encourage anyone who feels like their child is struggling in school to seek help!  It is out there.   Advocating for your child is hard!!  It takes a lot out of you, it is overwhelming and disheartening at times, but it makes the victory that much sweeter!  Isaac has worked so hard and he is such an example to me to never give up.  I am so grateful for what he teaches me!

Thursday, November 8, 2012

What's in a name?

I have been trying to start this blog for more than six weeks now.  I get all ready to go with a million ideas in my head about things I want to write and I get to that daunting page that says Title:            .

That blank space has never bothered me before.  Titles are easy, writing is fun, why can't I name it!!??

I finally, with a little help from my friends, decided to just go simple and fix it later.  In my excitement I forgot to put an apostrophe in my last name!  Nevertheless, I have jumped the hurdle.  The blog is open and ready to go.  My mind is swimming with ideas and I am so excited.  I'm sure many changes and improvements are soon to come.

While the misspell in my title will drive me crazy, it is a reminder to not let one little unknown stop me from accomplishing things.  Life goes on, you can either go with it, or get stuck in the blank space.


Wednesday, November 7, 2012

Trying something new

For nearly nine years now I have sat down every night with pen and paper and recorded the days happenings.  Occasionally, something to good not to share happens and I tell anyone who will listen.  The responses I hear on such occasions are always the same, "you should write a book" and "your life is so interesting".  I'm not sure interesting is the word I would use to describe my life, but it has been quite an adventure so far.  I have been married to an amazing, hard working, handsome man for nine and a half years.  We have four kids and I need only to say a few things about them for you to understand why my experience may be interesting.

Our oldest son is eight and was diagnosed three years ago with Asperger syndrome/PDD.

Our second child was diagnosed at 21weeks gestation with Trisomy 18.  She was stillborn at 33 weeks.

Our second daughter was born three years ago. She is a delightful, rambunctious ball of drama.

Our youngest son will be six months old next week.  He was diagnosed at 32 weeks gestation with hydrocephalus.  Since birth he has been diagnosed with Agenesis of the Corpus collosum, torticollis, scoliosis, plagiocephaly, and polydactyl.  Before you go and look all of those big words up, let me say that they sound really scary but he is doing really well.  We see a lot of specialists but really the only thing that has happened is our bills and vocabularies have both increased dramatically in the last six months!

Some days it all feels really overwhelming....other days I watch my amazing kids and see their accomplishments and I wonder why I am so blessed to have been chosen to mother such amazing spirits.

If I've learned anything in the last nine years it has been to celebrate small miracles, be so grateful for abilities, and never stop trying new things.