Wednesday, April 16, 2008

Update #51 from Danielle

Hey guys!
These past couple of days with Steve have definitely been exciting for all of us. I can't express enough how much he is improving each and every day. As each new day comes, he either "Wow's" us by writing a new note or makes us raise our own eyebrows when he does something new physically. It's so neat to compare where he was just a one week ago to what he can do today.
I almost feel as though there are too many new things he did to try to explain them in paragraph form....so I'll just list them off one after another: =)
-Last night he made the notion he wanted to write something, so we gave him a pad of paper and pen. He wrote "Do you..." Pointed at me, and then wrote "want to watch a movie?" That made me laugh. Do I want to watch a movie?! What about you?! He knew I was staying with him, so I think he was already 'preparing' on what to do for the next couple of hours.
-I set up the portable DVD player, (w/ Rob's help) on a table that could move over his bed. It was set up a little too high at first while I was still messing with the cords, when I noticed he lifted his torso and head off of the bed a little bit to see the screen. I assured him that I'd adjust the height of the table, and he leaned backwards again. This definitely shows he's getting more strength!
-Throughout the night he wrote short notes such as, 'More water', 'Socks off', 'Boot off'....but the one that was most impressive to me was after I noticed him rubbing his belly. He motioned that he wanted to write, and he wrote that he had a little stomach ache. When I clarified that this is what he meant, he lifted up his right hand close to his chin and put his thumb and index finger close together as to indicate 'Just a little bit'. So cute. =) The nurse gave a little medication and it seemed to do the trick.
-Linda and Beth reported that he wrote other notes too like 'My nose itches' and 'Can you get a Q-tip'...for his ears. It's SUCH a relief to all of us that he can communicate with us in this way. They also said at one point he accidentally held the pen upside down. When they told this to him, he quickly flipped the pen over on his own with his right hand only. Talk about good motor skills!
-Rob has definitely surpassed asking Steve simple addition problems, and is now asking him cube roots. The rest of us couldn't help but laugh a little at first when he first started asking Steve these problems, but he honestly seems to know the answers! He taught Steve how to answer by holding up the correct amount of fingers with his right hand. If the number was greater than 5, he was to hold up two numbers separately. So then Rob asked him what the cube root of 512 is. Steve held up 5 fingers first, paused, then held up 3. Amazing! Shoot-I didn't even know that the answer was 8! Rob says Steve knew cube roots at the drop of a hat before...it's incredible that he's showing us he still does!
-Something that made me laugh earlier this morning was when my sister Jessie called on my phone. I answered in front of him and said "Steve, Jessie's on the phone!" He then lifted up his hand and forearm and waved back and forth. I was so shocked and said, "Steve says HI!! Oh my gosh!!"
-They plugged his trach today for the first time today in therapy too. You could tell it was a whole new feeling for him to completely breath through his mouth and nose. He did great at keeping his O2 level up and concentrated hard on making noise. Even though he wasn't quite ready to make a clear voice today, he definitely whispered a heavy "Yeah" in OT for more water. The docs are going to have his trach plugged more and more throughout the week.
-The last thing I feel I should mention that was pretty impressive was when the speech therapist asked him how old he is. He lifted up 2, then 3 fingers up separately. What's crazy is that he was hardly responding, if at all, at the time of his birthday on March 3rd. He definitely seems somewhat aware of how much time has gone by.
Ok, I could go on and on...but this is starting to turn into a short novel. I hope that this caught everyone up enough and that I can post soon with more great news!!
Xoxo's
Danielle

11 comments:

Anonymous said...

Steve,

You made my day!!

Kathryn

Uncle Don said...

Thank you for the posting. I have been going CRAZY the past couplle of days not seeing any news, but I know that means good stuff is happening.

Sounds as if my hero is coming along pretty well. Every day is a blessing and a MIRACLE!! Keep up the good work Steve, we'll see you Saturday!!

Love Always,
Uncle Don

Anonymous said...

This is absolutely amazing! It has been great to hear about his incredible progress over the last week. We can't wait to see him again! -Brian Wolak & Katie Watson

Dotite said...

Danielle that is great! Thank you so much for sharing!!! yeay Steve way to go!!!!!!!!!

Anonymous said...

this is FANTASTIC. I am so thrilled!!!!!!!!!!!!!!!!!!!!!!!!! get it STEVE!

Anonymous said...

this made me day and made me smile to read all of the things that he is becoming able to do now. its amazing! great job steve, i will keep praying for you!

Anonymous said...

Dani-
Thanks so much for the updates!! You both have been in our prayers, and even though we haven't had the pleasure of meeting Steve, we feel the need to log on daily to see how he is progressing!!! We wish the best for both of you, and remember prayers are still coming your way from Illinois!!
Ronnie, Mary, Sierra & Jake

Anonymous said...

Dani,
Such wonderful news! Steve just never ceases to amaze us. This is so very exciting, I've tears in my eyes. Thanks for sharing every bit you all do!

Karen & Roger

Anonymous said...

Danielle,

Don't ever worry about your updates turning into a short novel. The story that you all have written in the days since 2-17-2008 is one of the finest literary examples of family. Having been in Maryland and seen the tears in your eyes, and now "hearing" the joy in your words, you have every right to write till out of breath so that we may all enjoy the awakening. The story that has unfoled on this site cannot be matched by any authors view of life. You all have shared emotional highs and emotional lows, medical highs and medical lows, and have done so with nothing but a love for Steve, and for each other, as your source of energy. Your novel already has a happy ending. You all are now writing the sequel.

Uncle Rick

Anonymous said...

Have you used a Passy-Muir valve on the trach? It will allow Steve to speak while on the trach - it is VERY, VERY effective...

http://www.passy-muir.com/

They don't need to close up the trach - they just attach the Passy-Muir valve

Anonymous said...

Hey Steve! Your Mississippi family is so proud of you. Keep it up!
love ya soooo much!
Aunt Kathie and the B.E.A.C.H. kids