random musings. December 17, 2009

As I sit here at the hospital, waiting for Miles to get out of  his MRI, I have a lot on my mind.

First of all, today is Greta’s birthday!! The big girl is 4. Since we had to reschedule the MRI to her birthday, she is spending the day with some friends and will have a fabulous day. Since her birthday present from  Mommy and Daddy (and Jessica, Mimi, Co-K and Nana) is a new princess bedroom, she will also be staying over night with her friends (so we can paint and decorate).  I must admit, I feel pretty guilty not spending my daughter’s birthday with her, but you have to do what you have to do! She will have a BIG birthday surprise when she comes home to her room tomorrow! I can not wait She will also have a birthday party on Saturday with a very special cake.

So, back to the MRI. They tried to sedate Miles with an oral sedative. He is too big and his body metabolized the medicine too quickly. He had fallen asleep, but when we brought him back for the MRI he woke up and was saying “tv” and “light on”. Apparently, he thought it would be more fun to just turn the lights on and watch tv than to have an MRI.  So, now we are just waiting for him to get out of his MRI under general anesthesia. The day at the hospital will take a little longer than originally planned, but I’m just glad to get it over with!

I have lots of new photos to share and will do so when I have some spare time (when I’m not at the hospital)

Next we will be off to Dr. Puccioni’s to read the MRI and reset his shunt.

More posts soon!

busy lee’s. November 30, 2009

I am so incredibly busy right now! No time for blogging. We are in the last 2 weeks of rehearsing for the Christmas musical at church. This of course, means that the person in charge of painting the set (yours truly) better get her tail in gear and finish things up! I am also a vocalist in the show,  so I have no spare time right now.

We did take the time to have 2 wonderful Thanksgivings! We are so blessed to have the best (and funniest) families in the world. I won’t have much time to blog for the next couple of weeks, so here’s the run down–

-Miles’ eye looks great and is healing nicely.

-His MRI to check for a tethered spinal cord is set for December 8th.

-He is still not pulling up to stand at ALL.

-His new favorite words are, “Abi”, “sit down”,and “George”

-Greta got a new haircut

-Charlie Brown is finished.

-Miles and Mom had a not so fun trip to the ER (nothing serious, just annoying)

I can guarantee that I will be neglecting my blog. Please accept these photos as a peace offering

a day at the hospital. November 20, 2009

Miles had his eye surgery today. We have known this day would come since he was about 4 months old. It was nice to finally get it over with. We woke up early and drove to Omaha. We arrived at the hospital and got our “CARES” room. This has been the worst part in the past because Miles loves to crawl and explore and we are stuck in a small room with a big boy  uncomfortably restrained in a stroller. Today, we decided to let him crawl and explore the room. He was a much happier little guy.

Then Miles and Mommy had a little photo shoot. You can really see how his left eye crosses inward.

On the way home, Miles was NOT happy. The nurses gave us elbow splints to keep him from rubbing his eyes. Rubbing your eyes can cause the stitches to burst! yikes!

About 10 minutes into our drive home, we pulled up next to a semi-truck. I heard a quiet little voice in the back say, “choo-choo”- that’s when I knew he was doing just fine! By the time we got home, had a little dinner and watched a little veggie tales, Miles had figured out how to crawl with his elbow splints!

 

my favorite book. November 14, 2009

Here is a video of Miles and I reading his favorite book. You can hear him say a lot of new words (in his own way ) and get a glimpse of his sweet little personality!

cruising. November 12, 2009

Miles is still not pulling himself up as much as he was about a month ago, but once he is  up he now comfortably cruises around.  He will have an MRI sometime this month to check if he has a tethered spinal cord.  When he stopped pulling himself up altogether a few weeks ago, we were very frustrated because every time we could get him into a standing position, he would cry and repeat “down, down, down!”.  He no longer objects once he is standing, but still rarely will pull himself up to stand. We are baffled, but it is now our goal to work on him getting up and down to the standing position by himself. Here is a video of his newest accomplishment!

 

Miles updates. October 21, 2009

Well, we have a few updates from the last couple of weeks.  We recently met with Dr. Legge (Ophthalmologist) and set up Miles’ eye muscle surgery for November 19th. It will be nice to have this out of the way. It will be the last of the planned surgeries.  With a shunt, there is always a chance of an emergency surgery, but so far- so good.

On last Wednesday, one of Miles’ physical therapists decided it would be best not to meet anymore for awhile. Most of these sessions are spent with her trying to get Miles to stand and play, and Miles trying (and succeeding) to get away and explore. The result is that we are making the whole standing thing a very negative experience. She doesn’t want to see Miles until he is standing a lot more.

Then, yesterday- Miles’ other physical therapist and I figured out why Miles has been so wishy-washy with pulling up to stand. Before his big cranial remodeling surgery, he was pulling up to stand a lot. Then it stopped.  We realized that we had started his dilation drops around the same time. He has recently been pulling up to stand a lot again, but last week, stopped! It was also last week that we stopped using the dilation eye drops…hmmmm. We are pretty sure that the changes in his vision are causing him to be less confident and to back track in this area It will be nice to have the surgery over with and quit messing with his eyes!

Miles continues to do great in his Speech therapy sessions.  He now has close to 50 words and is starting to put 2 word phrases together! His favorite words this week are:  “church”, “floor” and “see”. His therapist no longer wants to see him twice a week, only once.

And, finally, on Sunday we moved Miles from the “crawler” nursery at church to the “toddler” nursery.   Even though Miles is not yet “toddling”, we felt he would fit in a little better in that environment. He did very well and one of my friends even said that he made friends with another little girl and had to be closely supervised in the tent

couple new tricks. October 13, 2009

Miles has a couple new tricks! Most people might not think they are a huge deal…but we like to celebrate each new milestone!

Miles has taught himself to drink from a cup! He did this by repeatedly sneaking Greta’s cups off of her little table and finishing off whatever she had left.  We are still working on the occasional spill

In the car today, I told Miles that I loved him. He wrinkled up his eyes and smiled and made the same noise he makes when he is kissing his beloved puppy…and then I realized—he knows what “I love you” means! Kind of a big concept…

a growing list. October 5, 2009

of words!!!!

up, down, bye, bath, duck, quack, eat, more, no!, Dad, night-night, car, home, shirt, shoe, T.V., all-done, phone, fork, on, ball, sit, chair, shoe, flower, uh-oh, banana, milk, door, keys, pop, play, Mom, Greta

Just 2 short months ago, Miles began speech therapy. Each word is a miracle to us!

yakety yak. September 19, 2009

Miles has really been taking off with his speech thanks to his fabulous speech therapist!

Here are 3 videos of his favorite words…enjoy!

facing forward. September 8, 2009

Well, at 20 months of age– Miles is now finally facing forward in his car seat! He is now 30 lbs. and that is the limit for his current seat in the rear facing position. We also feel that his head control is good enough to face forward.  The first time we put him in the car seat facing forward, he just smiled and giggled! It was adorable.  Once we started driving he exclaimed, “weeee!”.