Wednesday, April 27, 2011

Good News: Hips!

One of the specialists Emma sees on a regular basis is an orthopedic surgeon.  Since Emma isn't standing or walking like a typical 3 year old and she has high tone in her legs there has been some concern about her right hip not sitting in the hip socket correctly.  Typically once it starts to get 20% out of the socket the doctors start to get concerned.  Emma's has been out as much as 38% out.  At her visit 6 months ago she was out 33% and the doctor gave us some initial discussion/indications about possible surgery in her future.  He also gave us certain stretches to do that could help her hip go back into place or - at the very least - help prevent it from pulling out further.  Chris and I were less than thrilled about that discussion and left with a renewed interest in adding stretches to Emma's daily routine.

Yesterday Emma had her 6 month follow-up and the x-ray showed that she is down to 27% out.  Yeah!  We are headed in the right direction and not discussing surgery at this time.  The doctor even mentioned that at her 6 month folow-up he will not need an x-ray unless his exam on her gives him concern and, if that happens, she'll go down the hall and have one done.  It is soooo nice to leave a doctor's appointment with good news for a change!

I have a feeling Emma's love of commando crawling and walking in her gait trainer are helping her make great gains with her hips.  Chris is also focused on stretching Emma each night as part of their routine and we will continue to make this a priority so we can keep surgery at bay.  We took the last two month off from horse riding because of the cold and snowy weather and hope to start Emma riding again in May.  Riding the horse helps give her legs an extended stretch and movement while she is enjoying a ride around the farm.  I've noticed that Emma's trunk has gotten weaker lately and mentioned this to the doctor.  He said the horse riding should help with her trunk muscles so I'm wondering if the break in riding is the reason for her "floppy" trunk lately.  I'm not sure if its the sudden change to warm weather or not, but I'm looking forward to seeing if starting up riding again will help her control her trunk muscles better.

Tuesday, April 26, 2011

Movies and health care musings

If there is a {fluffy} romantic comedy or feel good movie you could probably bet that I'm interested in watching it.  The last few years I've found guilty pleasure in escaping the everyday realities of life for some good fluff.  Besides the brief, but emotional, investment in Band of Brothers we watched over Christmas, I haven't been interested in watching much else besides the fluff.

This wasn't always the case.  I took a documentary film class in college - Senior year elective that I thought would be a cake walk but wasn't - and kind of fell hard for good and even mediocre documentaries.  The past few years, though, I've been snubbing documentaries and even avoided attending positively reviewed shows at our local film festivals.  But this couldn't last forever and our Netflix cue seems chock full of documentaries (that I must have loaded one day when Chris let me loose to update our cue) based on what they've been sending us lately.  King Corn, Enron, all things Michael Moore - Chris keeps talking about reviewing the cue to throw in some action and adventure movies because he has been avoiding watching the Michael Moore disks that show up.

Last week I watched Sicko.  If you can overlook some of the corny narration it is a very interesting look at our health care system.  Is it one sided?  Probably.  Is it thought provoking?  Definitely.

I was at Easter mass and had a flashback to a portion of Sicko and a portion of What Would You Do? (the show where they put actors in situations to see how real bystanders react).  I just kept thinking to myself that Jesus died on the cross for us and what his request to us was to love one another.  Seems like a fair trade for the promise of eternal life, right?  I wondered how good we are doing at the love one another request when in the USA, one of the wealthiest countries in the world, we continuously argue over covering basic medical care for our people and feeding our poor.  Really?  What the heck is our problem?

I'm not going to fire myself up this late at night, but suffice it to say that I've acquired gray hair and I've learned a LOT over the last 3 years about health coverage, health insurance, and how coverage for our disabled children varies greatly based on both your insurance plan and the state where you live.  I can be a bit dramatic, but I mentioned to Chris the other day that I think our country has a "caste" system when it comes to health insurance.

And I began to feel a stronger call to action on keeping the budget intact for the disabled children.

And I think after reading this post Chris will feel a stronger call to action to review our Netflix cue.

Saturday, April 23, 2011

Happy Easter

I love Easter for so many reasons!  It signifies new beginnings, a celebration after the Lenten season, and usually means spring weather/flowers/activities.

This year we started our Easter celebration early.  We had some friends over for an egg hunt, crafts and marshmallow roast and everyone had so much fun that I am thinking of making this an annual event.  It makes me feel so happy when I see how much joy these gatherings give my little ones!  They were pretty much over the moon with all the fun and that made me feel pretty much over the moon, too.

Even though it feels like we aren't having much good luck lately (anyone want to buy our house???!!!), it might be turning around a bit.  We won tickets from a local radio station to see Sesame Street Live.  The show was 1-2-3 Imagine starring all our Sesame Street friends and was a big hit with the girls.

Before we headed over to the show, we had some fun dyeing eggs.  I'm happy to report that this year we were more successful than in past attempts!  We used basic food coloring along with vinegar and boiled water instead of the contents of the PAAS kit that we purchased.  We did use the stickers and egg holders from the kit along with the memory game so it was worth the $1 even though we didn't use the  color things (I have no clue what they are called!).  The girls had a lot of fun picking the colors for their eggs.  Julia loved the red color the best.  For Emma, we showed her each color and let her use eye gaze to pick which color she wanted to dye her eggs.  The girls alternated turns in dyeing the eggs and it was great that both girls could fully participate this year.  I'm not sure if it is the set-up we had or that Emma is now older, but it seemed to work well and I plan to repeat it again next year.

Emma made an adorable bunny ear hat at school that she and Julia wore to dye the Easter eggs - Emma is so good at sharing (and keeping secrets!).  I just can't get over how grown up my girls look in the bunny ears!

This morning was a washout so we pulled out the face paints and Julia and Chris got their face painted while Emma got her had painted.  In a perplexing turn of events, the afternoon turned super warm and sunny so we headed outside for some fun and power chair work for Emma.  Tomorrow we are headed out to Easter dinner with our family and that is sure to be another highlight to our weekend.

We sure are packing a lot of fun into our Easter celebration!  Now, if we can find out where Julia's Easter bonnet went we'll be all set for church in the morning where we will all rejoice in the true celebration of Easter.  Best wishes to you for a wonderful Easter holiday!

Thursday, April 21, 2011

Random Bits

I just wanted to remember a few things that happened in our house lately, so I'm making a random bit post out of them like I've seen other bloggers do.  Makes it easier than having to keep an offline journal to remember all the bits :-)

  • Julia didn't like the song on the radio the other day, but I love it so I was singing it loudly and having a ball.  She kept asking me to stop singing and when I sung louder she yelled - "STOP, Mom.  You're Freaking Me Out!"  That actually made me stop and laugh so hard that I had a better time laughing than singing.  
  • We were milling about in the kitchen tis weekend discussing what to make for dinner and Julia came walking in, put her hand on her hip and started shaking her hip back and forth like she was dancing a bit.  She looked like a teenager and then she said really loud, "Daddy, I'm going to be doing this in my recital so you're just going to have to get over it!" and then she walked away.  Chris and I both had our jaws drop at that.  When did Julia get so OLD?  Oh, my, we are not ready for this, not one little bit.
  • Emma is going to test out the DynaVox Eyemax system next week at our hospital.  I'm so hopeful that she might find it easier to communicate with her eye gaze instead of using her hands to select an item on the ipad or switch.  I'm also so nervous that she will not cooperate for the test.  We've been working on training her to select items using a plastic sheet with PECS cards in the 4 corners.  She had used this communication system before we introduced the iPad so it's not a new concept for her.  She did well in the beginning but really has very little interest in this mode of communication.  I'm hoping that she will be more interested when the items are on a computer screen because she does like computers.  I'm really trying to have Emma break out of her comfort zone of sticking to mostly communicating her pleasure and displeasure through smiles/laughs and cries and get a more advanced communication system that she doesn't have to work so hard with her limited motor skills.

Sunday, April 17, 2011

Tutu Fun

Julia has been taking a fantastic ballet and jazz class at a local rec center.  Miss Amanda is the teacher and she has so much patience and makes teaching a group of rambunctious 5, 6 and 7 year old look easy!  The recital is coming up in May and everyone is excited about dancing on the stage.  Julia constantly makes me laugh and I find it funny that my girl can be so shy at school while always looking to put on a show and strut her stuff on a stage!  

This weekend we had dance photos and Miss Amanda picked the ballet costume for the photos because it is much fancier than the jazz outfit.  The kids looked adorable!  The costumes reminded me a bit of Tinkerbell and since Tink is such a hot fairy for little girls these day the girls just loved to prance around in them and play with the tutus.  So cute!

Here are some photos I took of our photo outing.  Julia is in class with her great friend Katie so I had to get some photos of the two of them together and of course a silly face is one of their favorite poses.  Enjoy all the blue and purple and five year old silliness that abounds in the photos.

Friday, April 15, 2011

Photo Fix

I'm still playing with my camera these days, but not getting as much time to do some editing.  The good news is that I'm starting to learn more about my setting to take better photos that need less editing, the bad news is that I have a load of photos that are less than ideal for sharing with you that helped me learn this - funny how that happened :-)

I had Emma in pig tails the other day.  I adore seeing her in pig tails!  And without a hat.  The hat is necessary to keep her CIs on most days as the magnets just fall off her head, but she's getting better at holding her head up so we use the hat at home less and less.  And that means I can put in some cute pig tails even though she hates when I fuss with her hair!  I decided I need to share her amazing cuteness in pig tails here for everyone to enjoy.

Emma still likes to swing on her Wingbo and loves to look at all our photos on her door as she swings by it.  Julia took all the photos from our Christmas cards and covered them with contact paper and then we posted them on the girl's room door and they both look at the photos a lot and Julia usually comments on one or the other most days.  I got this idea from a friend and think we will do it every year because I just love looking at all the Christmas photos and can't bring myself to recycle them at the end of the season.

In other news, Julia has decided that she likes getting her photo taken again after a bout of telling me "that's enough" every time I turned my camera on her.  It seems that she likes to pose a bit and I've learned that the area above our steps is a horrible place to get good exposure for photos without a flash regardless of how bright it is outside.  I'll have to change her favorite location for me to take pictures because some of them would be really cute if I could get good lighting and better focus and no amount of photo editing makes them look that good.  In the meantime I'm enjoying taking photos of her going about her business of play outside (photos to come later) where we are spending more and more of our time.  The warmer weather is a welcome friend here!

Tuesday, April 12, 2011

Hopeful Parents

My post is up at Hopeful Parents today.  Click here to see it on the site, or you can read it below.  I had fun writing this post and hope you enjoy reading it!

I'm a Borrower

There are many days when I have it together - strong, empowered, feeling full of sunshine and happiness.  You know the days - what we would consider the "highs" in reference to the highs and lows of life.  I bet I'm not alone in saying that I love those days!  I love to celebrate them and find little moments to do a happy dance because I know they do not last forever.
I am truly grateful that I spend most of my time on the positive side of the highs and lows, but it is inevitable that there will be some low periods.  And that is when I go into my borrow mode where I seek out people who are in the high and use their optimism and experiences to get through the lows as quickly as possible.
Wondering why our house is staying on the market for what seems like forever?  Why my non-verbal child isn't as excited to use an augmentative communication system as I am for her to use it?  Why my child will happily walk in her gait trainer all around our house but not even so much as move a foot forward when I bring it to school or private therapy for her (this takes a bit of effort on my part!) to use?  Why there is always a unexpected expense just when you found a little bit of money to get ahead?  Dreaming of how easy it would be if we didn't have to jump through ever higher hoops to get services, equipment, etc. covered because we won the lottery and could pay out of pocket?  Questioning what the future looks like for our children with all the budgetary cuts getting tossed around by our legislators?  
Thinking about all this is enough to put me in a grumpy mood so it's good that - this Hopeful Parents post aside! - I don't usually dwell on these at the same time.  But when I do start moving to a grumpy, less positive outlook on life I seek out and borrow faith, hope, joy, and resilience from others.  I talk to people who are positive, read blogs about children achieving, revisit Hopeful Parents posts that left me warm and fuzzy.  
Doing these things usually works to help me fake it until I feel it.  And then something magical happens.  I start to swing back to a positive frame of mind and don't have to fake it anymore.  Yes, I am a borrower.  And my outlook on life is all the better for it.  

Kristina contributes to several blogs and hopes that she can sometimes be a lender to those who need some help to fake it until they feel it.

Monday, April 4, 2011

A Tribute to Finney

Emma and Finnegan are the best of buddies.

Emma loves to walk.  Her favorite destinations are the glass patio door and wherever Finnegan is.

Finnegan used to move out of Emma's way, but the newness of Emma's walking has worn off.  
Now Finney just digs on in when Emma comes over to her and tries to walk over her.

Finnegan is not a bit worried of Emma stepping all over her.  
In fact, she just lays her head down and sighs.
Emma thinks this is very funny.   
So do I.

The end.

Sunday, April 3, 2011

Breaking News

Psssstttt.....notice anything different about me?


How about now?

Yes, my tooth finally came out!  You can even see the new tooth because it poked through my gums already!  I was so excited when it came out and rushed to get my tooth pouch and light that came in my tooth fairy book kit.  That way, the tooth fairy would pay me a visit.  I put the tooth in the pouch and placed it under my pillow, turned the light on and left it next to my bed and this morning when I woke up I found $5 in the pouch where I put my tooth.  Mom and Dad told me the tooth fairy leaves more money for the first tooth than the other teeth, but I was so very excited to see that she came!  I'm saving money for a Barbie doll house and I've added my tooth fairy money to my savings.  And I love to show off my missing tooth so next time you see me ask about it - that is if I don't run up to you and tell you all about it right away!

Friday, April 1, 2011

A glimpse into our day

Julia seems to age by the moment.  Right now she is anxiously awaiting a rite of passage - the loss of her first tooth.  It is a bottom tooth that is holding on by a mere thread.  I think it might come out before the weekend is over so I had her give me a great big smile and snapped a photo.  I love her smile and needed to capture it one more time in all its baby tooth beauty.

Emma is a flurry of movement these days.  This morning we had some one-on-one time together and I was really enjoying playing with her.  I was in for a big surprise when she asked to go in her crawler and told me in no uncertain terms to leave her alone.  She wanted to crawl all over the place and get into things without Mommy moving things out of her way.  After all, it's hard to get into some mischief if everyone keeps moving all the things to get into out of your way!  So, I left her in the crawler and put away a couple loads of laundry (it seems there is never a shortage of laundry going on in this house!) checking on her every now and again.

She moved from the living room to my bedroom to explore the Easter baskets filled with grass that were on my floor.  She found the butterfly wings and I helped her put them on because every little crawler needs butterfly wings!  She continued on into her bedroom to check out the bookshelf and eventually made her way over to Finnegan where she needed a bit of a rest and laid her head down on her faithful pup.  Finally, she headed back into the living room and decided she was done crawling.  I knew this because she started to yell and scream and when I started to help her off the crawler she started laughing.  I loved capturing a bit of Emma's adventures this morning and hope to see this independent side of Emma more and more.  

Help!  Someone quick, move me a bit so my wheels aren't stuck in this door!
That's better.  Now I can move again!  I love how you can see in this photo how quickly she is moving.
I love looking at my books at this level! 
I'm learning to be careful and not knock my head into all my books.

You don't mind if I use you to rest my head a bit, do you Finn?