Friday, April 07, 2006
Today we had a trip down to Children's to meet with Max's audiologist. Yay, he currently does not appear to have fluid in his ears...this is great news. We are hoping it stays this way and he does not require tubes (which can hinder the ability to wear hearing aides due to his "craniofacial differences"). We got him fitted for new ear molds...he is growing out of them so quickly and once they are even a little loose, you get feedback and the aides don't work very well. Additionally we got them programmed a little stronger and we are HOPING that helps Maxwell. We are planning for another hearing test in June...perhaps a sedated BAER or if he is developmentally doing well, we may try a response oriented test. I hope he can do the latter! Ran into several of his doctors and nurses and of course they were blown away with how great Mr. Max is looking! Always fun to show him off! :)
We had our various therapy appointments this week and everyone is very impressed with his recent progress. So exciting to brag about his new "tricks"...lifting head, rolling from side to side, verbalizing more, touching toes. Unfortunately, he is not wanting to lift his head as much like he did earlier this week. He seems to be quite particular about when he wants to do his therapy and when he doesn't. But progress is progress so I am not going to complain.
Then yesterday afternoon we had our car seat checked at the police station. They were incredibly helpful and gave me extra tips to adjust the car seat now and in the future to help ensure his safety with his low muscle tone. Such a great service they provide...I recommend every one does it. Even if you think the seat is in properly, I guarantee they can tweak it to make it even better! I had it near perfect but now I feel much better having it checked by them. Thank you Bellingham Police Department!
Max is zonked right now from his long day on the road, but soon he will wake up and we will get going on our favorite activity - BATHTIME!!! So I must run...and get everything ready for him.
P.S. My biopsy came back negative - yay! :)
Mommy, for real. A doggie hat?
(This has to be one of my all time favorite photos of sweet Max! Could he be ANY cuter???)
Yummmmmmy...Mommy's glasses are delicious!
(Max LOVES to take my glasses off and play with them!)
Wednesday, April 05, 2006
So I just went in to say hi and give him a quick kiss and sure enough he returned the gesture with a "Max Attack," which is absolutely hilarious. He grabs my hair on both sides of my face (and his grip is QUITE strong these days!) and pulls me closer and then takes my nose into his mouth and bites and sucks it. Sounds funny I know...and trust me, it is! But it is soooo adorable! All the while he makes this funny sound "aaahhhaaahhh" because he is so excited! :)
Ok, back to dealing with the insurance company...YAY!
Tuesday, April 04, 2006
For more photos, visit the Treasury of Memories blog: http://www.treasuryofmemories.typepad.com
THANKS AGAIN EVERYONE!
The Mighty Maxwell Guild
Last night I didn't have a nurse and while I didn't get much sleep, it was fun to sleep in the same room with him and listen to him breathe. (And when he would wake up he would play with this toy that sounds like a bell...so it sounds like he is "ringing" for me to come play too!)
And it's amazing what you can get done at 4 in the morning! But really, I did manage to get some sleep since he is so much more stable right now. Not sure how it would be if he was sick because then his O2 sats are all over the place and he needs suctioning frequently. The one odd thing right now is that he has bradycardic episodes more frequently than before...last night the monitor never stopped beeping.
We'll see. As much as home nursing is soooo incredibly helpful and it will be difficult without it, I do look forward to having our home once again be just "our" home and be on "our" schedule. I know we will find a way to manage...there may just be a rough transition. I (with hopefully some help from the other parent) will have to hire someone with nursing training who can help with Maxwell so I can run errands, sleep occasionally, etc. -- all things you cannot do with a "medically fragile" kiddo. I am confident it will all work out...what is most important right now is how great Maxwell is doing!!! :)
Talked with the pulmonary team today and they said Max should remain on oxygen despite good saturations. They reviewed his last echo and it showed several problems and those will worsen without supplemental oxygen. I put another call into cardiology to confirm that they agree. I am HOPING he wants a repeat echo and this will show much improvement since January. However, pulmonary said not to get my hopes up because it usually takes six months or so to show that much of an improvement and therefore it will be months and months before the 02 "nose hose" will be removed. Darn it, darn it, darn it. And one more time....DARN IT!!!
Monday, April 03, 2006
Fortunately, these past few weeks he finally decided tummy time wasn't complete torture and would accept short periods of time. And he has attempted to lift his head briefly (for just about two seconds) and only a few times and then he would be upset and exhausted. THEN this weekend he decided "heck with it"...let's do this already! When placed in just the right position and with LOTS of encouragement, he lifts his head much higher and for a much longer period of time!!!! And then if that isn't great enough, he uses that as a launch to roll over!!!
YES, you read correctly. HE ROLLED OVER!!! Yay Maxwell!!! Lifting your head and rolling over...TWO BIG MILESTONES ALL IN ONE DAY! WOW!!! :) He has made such tremendous progress this past week...and I am absolutely thrilled! :) Can you tell???
His oxygen silly! Can you believe it??? It was a temporary trial on Friday and he PASSED!!! He went five hours without being on oxygen...it was absolutely incredible!!! I had not seen his sweet face tube free for that long of a time...EVER! So of course I snapped many, many photos and smothered his "tube free" cheeks with lots of kisses! :)
I think it goes without saying that this is a HUGE step for Mighty Maxwell. HUGE!!! :) We are trying to slowly wean him off oxygen and see how he does. But we also have to be concerned with his pulmonary hypertension, which requires some oxygen despite good saturations. I am putting calls into cardiology and pulmonary today to get their latest thoughts on how I should proceed. Right now he is on just a tad of O2 (the least amount that he has been on post heart surgery) and doing great...hopefully this afternoon we will do another successful tube free trial!!! GO MAX GO! :)