SHAKESPEARE GETS THE "MAX ATTACK"

It's me again, Mighty Max!

Recently I found a new toy...Shakespeare! I love pulling his hair and tonight I tried to give him a "Max Attack." Lucky for me, our wonderful dog is quite tolerant!!! :)

Hope you enjoy the pics! Love, Mighty Max


Hmm...that hair sure looks tempting! I bet I could pull it!













Here goes...ARGH!!!















And now for the two handed attack...I love going for the tail!












"Max Attack" completed ... mission accomplished!

MY NEW "SEAT"

Hey everyone!

Evan's mommy gave us a great suggestion for a play seat - our laundry basket!!! :) My buddy Evan is a little bit stronger than me so he can sit up unassisted and the basket protects him in case he starts to sway.

So to give me more support, Mom put a bunch of balls in with me...PERFECT!!! I tried it last night at Aunt Eliz's house and it was soooooooooooooooooooooooooooo fun! I just smiled and smiled! :) Wait until you see those photos...too cute! Jackson climbed in with me and helped hold me.

And then tonight I got my very own set from my friends, Jen, Dale and Aiden! Thanks guys! As you can see, I love my balls!!! :)

Love, Max

ANOTHER DAY AT THE DOCTOR'S

Today was a purely medical day...sorry Max! This morning we were dealing with the equipment company and working through some issues with his oximeter and sensors. It broke yesterday and so we didn't have anything to measure his sats last night. Fortunately we had a nurse, so she kept a close eye on him. But with this current cold, I definitely wanted to get a new one ASAP.

Then the entire afternoon was spent at the doctor's office. Max is still "presenting" respiratory distress with labored breathing and a respiratory rate often in the 80s. However, he still continues on as though all is well...playing, smiling, moving around. The doctor was concerned too and immediately wanted a breathing treatment for him. However, that produced little improvement, so she ordered another blood draw for electrolytes and a chest xray.

Since Maxwell is breathing so fast, he actually is keeping his bicarb quite low...so he is compensating well on that issue. They are concerned though that if he continues to breathe this fast, he will tire and not be able to rid the body of the CO2. So we will be watching for that. Fortunately, the xray didn't show any major pneumonia spell...just the same ol' "chronic lung disease."

The doctor called our pulmonary team at Children's, and they decided to try another heavy dose of steroids and some additional breathing treatments. They explained the negative effects of too many steroids (Max was just weaned off nearly a month long course a few weeks ago), but really there is no choice considering the situation. Hopefully this helps and it will only be for a week. If we don't see improvement over the weekend, pulmonary wants to see him.

As always, Max and I managed to have some fun in between all the tests and consultations at the doctor's office. :) I love our connection and our ability to have fun whenever and wherever...he absolutely amazes me. He makes me do the silliest things and I could care less! Anything to make him smile! People always tease us about how silly we are together, but that's ok! (Sara, you are one of them!!! :) hee hee!)

Max loves, loves, loves the white paper they put on the examining table so today I rolled him in it and he thought it was hilarious. Then he was going to town pulling my hair and eating my face...he can give quite a strong "Max Attack" these days! The doctor kept telling us we were having too much fun for a doctor's office! :) I told her this is the only way we get through days like this...by making sure we get lots of giggles!!! :) She was cracking up at our games. Max was eyeing her hair too, but instead got a hold of her stethoscope and would NOT let go.

It's funny how everytime a doctor walks into our room, they almost always are chuckling at us! Either we are dancing, doing therapy or I'm telling him how incredible/beautiful/miraculous he is.

On Monday, the audiologist was teasing us because I was giving him a pep talk before the hearing test and she said that she and our local speech therapist were talking about how silly we are together (in a good way...I hope!!!). She was telling her how recently when she came for a home visit, she could hear me singing with Max practically a block from our house! A little embarrassing, but hey...I want him to be able to hear me! And he does respond, so that is good for "receptive and expressive communication" (two goals of speech therapy), right?!?! :)

Well, I think I best run. Max is playing beside me right now and just chugging along...I don't know how he does it. If I breathed that fast for more than a few minutes, I would pass out! He is one tough cookie!

* Look at how cute and grown up Mighty Max is in his first college t-shirt and jeans! He's sporting his mommy's alma mater, Ohio University. This was a gift from the Koenig gang (a sorority sister/roommate/great friend)! Thanks guys, we love it! :) I totally forgot to post photos from our fabulous weekend together...I will try to later. Thanks again for EVERYTHING! :)

LOSS IN THE CHARGE COMMUNITY

Another sweet lil' baby CHARGEr has passed away. We, including her parents, were all quite shocked because Zoey was doing so well. Such a beautiful girl! They said she was cooing and smiling the moments right before she turned blue. The dad attempted CPR on her, but the paramedics believe her heart (she has the same Tetralogy of Fallot defect as Maxwell) gave out and that is why she passed so quickly.

Just last week I responded to the mom's posts about Zoey's milestones and was just in awe of how great she was doing. And now she is gone...so strange.

Another CHARGE baby (in South Africa) passed away recently too. It is always eye opening for CHARGE parents to learn of this news. Even though we know the statistics, we don't like to think of them in terms of our kiddos and our friend's kiddos.

Please keep Zoey Faith and Cherise in your thoughts and prayers. Thank you.

NEW TOY FOR DISTRACTION! :)

Thank you everyone for the very supportive emails. It was just one of those days and this morning wasn't quite better. Talked with his craniofacial doctor and Maxwell probably needs yet another surgery. This disorder ("the midline defect") really is crazy, just crazy. It can impact each and every little part in a body....sooooo frustrating.

I'll explain later this week about everything that is happening...just not ready right now. Nothing horribly new...just a reality check for me and that can be discouraging sometimes. And sometimes when I am feeling the most frustrated or discouraged, I want to keep those feelings inside because they are too painful to share. Hopefully later this week I will once again be able to share with a more optimistic approach.

So in the meantime, we focused on a fun morning. Max loves when I bounce on the bed and I got him smiling with that...however, that also made him vomit. Nice Mom, real nice. I felt horrible! Then we assembled Max's new exersaucer that we bought yesterday. I had heard about this one and have been super excited to get it!!! (Instead of being on the inside of the toy, the child rotates on the outside!) We are developing quite an assortment, but I think it is worth it since it will take him a long time to strengthen his legs and torso for walking. Here are some super cute photos from this morning. Enjoy! :)

Can you find me???

Here I am!!! :)

Look at all these fun gadgets...cool! (And the music is really loud, which is quite helpful for a guy like me! Bonus!)

That toy over there looks interesting...maybe if I just s-t-r-e-t-c-h my arm real far I can get it.

Ok, I'm pooped. This toy is super fun, but I need a break. This fast breathing really takes a lot for a lil' guy.

EMOTIONAL DAY AT CHILDREN'S

Whew, what a day. We were on the road for nearly twelve hours and that about wiped out lil' Max...and without Starbucks, it would have wiped me out too! :)

It was a very emotional day for several reasons, but I don't want to go into them tonight. Right now I just want to head to bed. I try to not think of Max's "shortcomings," but today they were there loud and clear....and it was just a little too much. He is so incredibly amazing...I just wish his "shell" (his body) could keep up with his beautiful, determined, loving and happy inner spirit.

In addition to the developmental issues today, we also were experiencing some medical concerns. And we are hoping that tomorrow we don't need to drive back to Seattle. Max is still having some difficulties with breathing, coughing, vomiting, etc. (same issues as this weekend) and the team was quite concerned....especially with the high respiratory rate. We did a blood gas and sure enough, his bicarb was up. They want to see him if he doesn't make improvement over night. My gut is that he will be feeling just enough better that we can avoid that possible hospital stay.

Now I need to close my eyes and turn off my emotions, my concerns, my questions about Maxwell...they will still be here tomorrow. Hopefully he is feeling well enough to give his mommy a happy dance and start our day off on a good note.