Wednesday, February 22, 2012

All great things

Sorry it has been a bit since my last post.  No excuse really, just not much to report until now :-)

(This video is where Lila get to have fun at therapy!  I bet she wishes we had the "spider" at home so she could jump all of the time :-) )

It is said that after any intensive physical therapy program it will take a few weeks to really start seeing the changes in your child.  You may notice strength right away, but not necessarily the major changes in the neuro-pathways that develop from these therapies.  SURE ENOUGH, "they" are right!  Lila is doing amazingly well!  Przemek will be glad to know that her least favorite exercise in New Orleans has made the most impact thus far!  Lila is balancing independently every single day, multiple times a day.  Yesterday, I believe she stood independently at least 10 times at home, she stood the entire time during speech therapy (not all independent balance), and had balanced independently at physical therapy in the morning as well.  She is standing independently while zipping her jacket, while wiping off her face after lunch, while playing at the kitchen with Nora...using this new skill in such a variety of activities.  This is a HUGE milestone for her, and a very exciting one for our family as well :-)

I am not sure how much I explained when I mentioned that we were switching physical therapists, however Lesley (Lila's new PT) has gone to Michigan and been trained in this intensive PT program that we have been attending out of state.  This means that we now have the same services right here in our back yard!  Fortunately for us, Lesley had time open in the mornings for Lila, and now she gets to work in the cage and the thera-suit every single week.  She really looks forward to going to therapy and gets to have some fun too!  Her strength just amazes me, and if you give her gum while she is can get anything out of her!!!!!

oh my goodness...I want to scream it from the mountaintop....LILA TOOK HER FIRST TWO INDEPENDENT STEPS THIS EVENING!!!!

Matt was getting the bath ready for the girls, and I was downstairs getting a salad ready for dinner.  Lila and Nora were playing in Lila's room when Lila called for Matt to come and watch her.  I heard lots of cheering, but hadn't even imagined that this was what she was doing.  So, I came upstairs and watched Lila lean away from her bed to get her balance, then take two steps and fall to the ground....happily!!!!  We were all so excited, and could not be more proud of her after all of her hard work over the past 6 months.

Monday, February 13, 2012

Happy Valentine's Day!

Happy Valentine's Day!  (Thanks to Auntie Bonty!!!!)
The girls send their love to you and all of your families.  Hope you have a wonderful day!

I hope this news helps your day to be as great as ours...
Today Lila took it upon herself, twice, to stand independently for at least two minutes each time.  We did some exercises this morning, and it may have sparked her excitement to stand.  Each time she did this, she was doing something while standing...eating pretzels and drinking water.  Crazy exciting!

Secondly, she is doing so much better with tracing her name at school, and can now recognize her name out of a field of nine names!  This is exciting, and I am not sure why it has taken so long.  Well, doesn't matter...she is learning each and every day!!!  Yay!

Lastly, the past week we have had various flu bugs power through our house, so the girls and I were a bit off until this past Sunday.  They were having so much fun and laughing a ton doing gymnastics :-)

There is always a lot of singing in our house, and I am glad to have captured it for you all...ENJOY!

Thursday, February 9, 2012

Funny kids

The girls have been so silly this past week, so I thought I would share.

Nora and Lila love the airplane (and Nora spots every airplane in the sky, even if it is a spec in the distance!), so one morning Nora convinced Lila to pretend to be an airplane and fly around the house with her.  I was laughing so hard, and it was too funny not to share...
ok, not the best video, but you'll get the idea :-)

Matt and I got a few free hours together last Saturday morning, and decided to run errands (may not seem all that fun, but we had coffee/tea, took our time, and were very relaxed) and had a very nice morning together.  At the end of our shopping extravaganza, I remembered that I wanted to get the girls some sunglasses.  Since Lila does not have to wear her glasses any longer for distance, only for close up tasks, she has been affected quite a bit by the sun.  So, the glasses allow her to ride in the car and enjoy the ride, not space out and leave us for a bit.  Anyway, I found the most adorable glasses, of which the girls have been wearing non-stop since they got them.  Wearing them at breakfast, while doing PT exercises, while climbing over the couches, and while at church.

Nora tends to have hers on her head a lot, but Lila actually wore them the entire time at church, and felt quite comfortable doing so.  Oh, and Nora prefers to wear hers upside down (or as she likes to say "up and down") Funny girls!  Goes to show how such an inexpensive item can make kids so happy :-)  Love it!

Thursday, February 2, 2012


Lila and I have been home for a week and a half now.  A lot has happened in that time, and I am looking forward to getting back to some peace and quiet.

What has occurred over the past ten days?  Lila's teachers have recommended that she stay back in kindergarten for another year, but go for a full day.  Matt and I knew at some point that we would hear this and have to make the best decision for her, but didn't see it coming in January...5 months before the school year ends.  Nevertheless, we have to take their recommendation and do what is right for Lila.  I am sure she will thrive and am looking forward to her gaining confidence in academics.

Secondly, we made the decision to change physical therapists.  Possibly even more difficult than the aforementioned.  Libby has been absolutely amazing, however Lesley has been trained in this intensive therapy program that we have invested so much in for Lila, and are seeing such amazing results.  So, in Lila's best interest, we have decided to make the change.  This also came from Lila seeing the "cage" in the new physical therapy space and asking to do exercises on the table, right when we got back from New Orleans.  We had our first visit with Lesley on Tuesday...Lila got to work in the cage doing strengthening exercises, and then went to speech.  After 45 minutes of speech, she asked to do more exercises in the cage!  I guess it was the right decision :-)

Lastly, Lila had an appointment with the ophthalmologist, Dr. Hong, that performed her eye surgery at 18 months.  Our typical eye doctor recommended that we see Dr. Hong for Lila's next full check-up, to take a look at her weak right eye and double check her prescription.  Dr. Hong was not one of my favorite doctors early on, which is why we just stuck with our normal eye doctor, however there was a big change in the doctors demeanor during this last visit.  Pleasant surprise!  We talked about Lila's right eye, which was working 100% with her left eye the entire visit (2 hrs and 20 minutes), which was so great to see/hear!  We tested for color blindness, and talked about PVL on the brain (possible vision issue relating to Lila's lack of focus in school).  Turns out that Lila has grown out of her prescription (YAY!) and only has to wear her glasses for reading (possibly a stem cell blessing :-).  I have been talking to Lila's teachers about color blindness for the past 2 1/2 years, and there was no way to test her at such a young age.  We were able to finally do the test and see if this is a problem for Lila.  Dr. Hong was not ready to diagnose her completely, even though she did get the two controls correct, and very very fast, and then could not get any of the other letters right through the rest of the test (the five pages following the control are all related to color blindness!!!).  So, we will retest her in three or six months and see if we get the same results.  I believe this is a big issue for Lila, and if we knew for sure we could alter her education accordingly to help her progress.  So, a great visit, and very productive :-)

I had two doctor appointments today, as it is time for me to take care of myself.  Seems as though Matt and I have stopped caring about our health, which really needs to change.  I am very excited about making some healthy lifestyle changes and being a better mother because of it!  Here's to 2012!