Tuesday, April 11, 2006


Before tonight's bath, Max and I had a little impromptu photo shoot with him and his big cuddly bunny! Tomorrow Max is having his first "professional" photo shoot...so excited! Eliz and the boys are joining us too...should be fun! :)


I'm worried tonight and I'm not sure if it something or nothing...but I have quickly learned that in CHARGEland, you always have to question EVERYTHING because this syndrome is so far reaching.

In the past few days, Max started "nodding/twitching" his head a bit...hard to explain...kind of like when someone does the casual nod to say hello (but less pronounced than that). It's just an ever so slight movement but it is noticeable. He doesn't do it all the time...but when he does, it is a repeated movement.

Today someone noticed it when I was babbling with Maxwell and commented "how sweet, he is nodding at you!" Then it was even funnier because the man's wife then commented "oh wow, he just winked at me!" Little did they realize that the "nod" was worrying me that something was wrong neurologically or with his muscles AND his "wink" was actually due to his facial palsy! Too funny! :) Then later, another person said "wow look at your baby...he sure never misses a meal..look how big and healthy he is!!!" I wanted to laugh and reply "you're right, he never does miss a meal...he eats 15 hours a day!" But I didn't...but it was SOOO wonderful to have people admire my baby, not because of how much progress he has made...but solely because he is an adorable baby! (See this is one of the first times he has been out and about without his O2 cannula on. Usually they comment on that first.)

But ANYWAY, I digress...back to my original concern. I don't know what to make of this "nodding/twitching." I have put the word out to other CHARGE families and tomorrow I meet with our PCP. I have a feeling if it continues we will be scheduling something with neurology. CHARGE kiddos often have seizures and/or related issues. And I am trying to not freak out yet but it makes me think this could be related to that somehow...but HOPEFULLY I am blowing this all out of proportion and this will go away.


"Future's so bright...gotta wear shades!"
(How absolutely ADORABLE is Max in his new hat and shades???)

Mom, seriously do you EVER put that camera down?
(Whatever Max, you love it!!! Elizabeth and I were just joking this week about how Max ALWAYS turns to the camera...he is already such a ham!!! Love it, love it!!!)

Am I a bathtime beauty or what???
This is the very first book I read to Max and we still enjoy reading it together. After we were done reading today, I put him back in bed for a moment and he was busy playing. And then I turn back around and he is passed out with his book and all his toys...too cute!!!


On the way back from Children's the other day, I stopped at an outlet in search of a good hat and sunglasses for Maxwell. His facial palsy (I will write a post one of these days about that, I promise!) prevents him from blinking his right eye and therefore the bright sun really bothers him.

So I was SO excited about finding a hat with a good brim and a pair of true sunglasses. As soon as we put the hat on him, I started crying and laughing in the store. I mean, come on really, HOW ADORABLE IS HE??? It is absolutely ridiculous how cute he is!!! :)

Like my hat? I do too!!!

My hat protects my eyes and it is fun to play with! And as an added bonus, everyone thinks I look soooo cute in it! Like I needed any more attention!!! :)

Monday, April 10, 2006


There was much discussion between the pulmonary and cardiology doctors but the decision has been "tentatively" made...Max can be free of his supplementary oxygen as long as keeps his saturations stable. YAY MAX!

The discussion was because of Max's pulmonary hypertension, which requires supplemental O2 even when sats are good. However, they are not sure if the pressure is in his heart is caused by a lot of the hypertension issue or because of an issue with his heart (arteries too small). So since we have to try this sooner or later, they decided to give Max a "GO" for the next month. Then we will have another echocardiogram and see if anything has changed. That should provide us many answers...hopefully.

So it's good news and bad news according to the doctors. GOOD NEWS: He can get off oxygen for now. BAD NEWS: If in fact the pressure is not due to the pulmonary hypertension, then he may require another procedure (dilation of the arteries most likely) on his heart.

And the GREAT NEWS is that he has managed to be off of oxygen during the day over the weekend and did really well! He still requires O2 at night, and boy does he get angry when you put that cannula back on him! Yikes! Watch out!

All of this is so incredibly exciting! I still bring the O2 tank around with me in case he does require it while we are out and about, but so far, no emergency hook ups! And I still keep him on the monitor 24/7 of course to ensure stable saturations.

Another good thing about all of this is the less oxygen the better for his tender nasal passages. The ENT was really pushing me to get him off the O2 because it really dries out the nose and then it bleeds and irritates the surgery site and we are trying to leave that alone so it doesn't want to close again. Keeping our fingers crossed on that issue...I can not believe it has stayed open for this many months!!! WOW!!!


These are the two big oxygen tanks in our living room. It will be soooo great to finally have this lovely "decoration" gone someday...sooner than later hopefully! I think we will be singing the good ol' victory song, "hey hey goodbye, na na na na na na na hey hey goodbye!" (or something like that!!!) :)
And here are the portable tanks...they have been a lifesaver. I remember in the beginning how intimidating it was to release the pressure off of one, start up a new one, etc...now I know exactly what to do and I simply get one ready, throw the backpack on and go!