Friday, December 08, 2006


I am pretty attached to Mommy these days and if she leaves the room for even a minute, I will cry or try to find her. She loves our special connection, but says it is quite difficult to get things done while holding me all the time. I haven't quite learned how to hold on yet so I am a two hander for sure! I guess I need to learn some independence...but really, isn't that overrated?

Anyway, that's the cool thing about my new mobility! :) I can try and find her if she is nearby. This morning she had the nerve (ha ha) to leave me in my bedroom while she went to the bathroom to clean out my Gtube extension and bag. Well sure enough, I was quick on her trail.

Hey I come.

On the move and getting closer...

Found you! Now I need a quick break. Perfect time for a downward dog pose.

Wednesday, December 06, 2006


Sweet Grammy, we hope you have a super wonderful day! We love and miss you very much!

You are an incredibly important person in my life and I am blessed to have you as my Grammy. You have been with me for some truly exciting moments, haven't you? :) What about this...your birthday present this year is my promise to work really hard to reach my goals AND to avoid any long hospital stays. Sound good? :)

Have a wonderful day! Love you! :) Mighty Max

Tuesday, December 05, 2006


Yep, today was one of "those" days. One of those days when Max's developmental delays slap me across the face. One of those days that reality sets in and emotions take over. And then of course on one of "those" days, you start questioning your abilities as the parent/therapist/nurse and of course nothing ever feels good enough.

The emotional wave started at Max's OT appointment. The OT, PT and I were looking through catalogues to decide which swing would be best to assist with Max's vestibular issues. (This is a big problem for many CHARGErs.) And we aren't talking about some baby swing here...we are talking about a ceiling installation of a heavy duty therapy swing in the middle of our play room. (Thank you Kristy for hooking me up with a possible contractor...very thoughtful.)

I want to do everything possible to give him this much needed sensory input. His head shaking doesn't appear to be stopping anytime soon and will become even more noticeable and invasive as he gets older. This swing should also help with torso strength and coordination. Anyway, for some reason this discussion as well as Max's lack of strength with another very simple toy just threw me. And the eyes started to tear up...

Then we went to Target for some new therapy toys suggested by his OT. When I realized that I was buying toys in the 6 month range (simple cause and effect toys), it hit me again. My child is nearly 19 months old...yet developmentally we are nowhere even close.

Perhaps this wave of emotion really started last night. We had dinner at Eliz's house and played with Tom Tom and Jackson. As much as I absolutely love spending time with my amazing, adorable nephews, it also is such a harsh reality check. Thomas (same age as Max) is incredibly well developed. While Max is laying there on the floor mouthing a toy, Thomas is feeding the dogs...literally. Getting the scoop of food and bringing it over to the dog bowls. He is very impressive. And while I know, I know, I know I am not supposed to compare...sometimes you can't help it.

Anyway, enough of the pity party. Tonight Max and I had a good and happy night and I am excited to play with all of our new toys tomorrow. We made several homemade toys tonight too and I think they are going to work great. Plus we have several therapy appointments in the next few days, and I am looking forward to setting up new short term goals to give us that much needed encouragement.


Recently Maxwell has discovered the ability to kneel up to the crib railing to protest sleepy time...and of course I can never resist and always pick him up!

Nope, not ready for bed yet Mommy.

(Note Max's "rug burn" on his forehead...too many downward dog poses!)

Opps, I lost my grip and down I go.

Back up again...hmm, what should we do now Mom?

Oh I guess I am tired. Night night.


We have a new favorite ornament courtesy of Miss Eva and her mommy! It's a hand signing "I love you" with Max's name on the front. How perfect is that?

We love, love, love it! It was the very first ornament hung on our Christmas tree, and it is front and center so that we can admire it often. :) Thank you Eva and Crystal!

Monday, December 04, 2006


Mommy usually doesn't let me watch television, but we tried it out this weekend. I wasn't feeling very well and I had little energy to play. She pulled up my comfy, personalized "Maxwell" chair (love it Drew & Steph!) in front of our big TV and popped in a Baby Einstein video.

As you can see, I was pretty absorbed in the video.

(And how absolutely adorable do I look in my cozy sweatsuit???)

Wow, that is one BIG bunny.