Going for a Ride!

Little Buddy has really enjoyed getting out of his bed and out of his room for awhile to take a ride around the hospital in his wheelchair. He really enjoys going and seeing the big fish (painted wood fish on a track) that swim behind the elevators on the main floor. He loves that he gets a change of scenery every now and then!

Friday & Saturday

Our Little Buddy continues to have a very positive attitude and to work hard at his therapies.  On Friday, for his physical therapy, they put him on a slanted mat, and rolled him down the "hill" into some big plastic bowling pins.  One of Little Buddy's favorite games on the Wii at home is bowling, so he thought it was pretty cool to be a human bowling ball!

The care that Little Buddy is receiving here is truly first rate.  We have been so impressed and grateful for the doctors, nurses, and therapists who have been caring for him.  We truly don't think he could be receiving better or more loving care anywhere else.

We are also incredibly grateful for the kindness and faith of so many friends - some of whom we've never even met.  We continue to be humbled and touched by the goodness of others.  We thank each one of you for all you have done to help our family and little boy!  You all have made such a difference.  We don't know how we could make it through this without you.  Thank you from the very bottom of our hearts!

Thursday

Today we had a care conference with all of Little Buddy's doctors to better plan what the short and long term goals each department has for him.  He is primarily done with Neuro Surgery, and the main things we have to look at now are his cancer treatments and his therapies -- Physical Therapy (PT), Occupational Therapy (OT), Speech Therapy, and Music Therapy).  He is still on his feeding tube, and probably will be for several more weeks.  He also has a long way to go with his other therapies, and so we are going to try to keep him as an inpatient for at least the next seven weeks, and then re-evaluate where he is and what we need to do at that point.

We also found out today that he will start his radiation and chemotherapy next Thursday, on Feb 12th.  He will have 30 radiation treatments that are scheduled to end on March 25th, but he won't have his last chemotherapy treatment until the end of February or beginning of March 2010.  Medulloblastoma is a very aggressive form of brain tumor that they have to treat very aggressively to keep it from coming back.  The good news today is that his lumbar puncture showed that there are no cancer cells in his spinal fluid.  That, combined with the fact that the cancer didn't spread and they got it all out in surgery greatly increases his chances for a long and happy life - to as high as 85%.

I really don't want to sound ungrateful by saying this, but I have to be honest that while I am extremely grateful for all of the many, many blessings that have come to help and save Little Buddy, my heart is heavy tonight because I miss having my little boy at home, and I am sad for the hard year he has ahead.  The house seems empty with him gone, and it appears that he will be gone from home for at least two more months, and most likely longer.  It's just kind of a sad situation, and I miss him very much.

Wednesday

I am very happy to report that not much new happened today.  That is a good thing because it means that our little guy is doing well.  Little Buddy did get his first bath since all of this happened.  A wonderful (and very needed) thing.  He also had very good therapy sessions, and continues to amaze his theapists by how hard he is working, and what a good job he is doing.  He almost was able to hold up his head by himself today!  That was exciting.  Our little friend is a real trooper who is working as hard as he can with a smile on his face and without complaining to get back to where he wants to be.

Tuesday

Our little buddy had a very sucessful day today.  The best thing that happened today is that he got his shunt out!  The CT scan looked good, so the shunt came out.  That is really a big step in the right direction, and we are so happy.  That will give him more freedom to be moved around without concern for the shunt.  He will now get to sit on Mommy's lap more, be rolled in the gym for his therapy, and, best of all, get a bath (finally!).

Little Buddy also had some very good therapy sessions.  The therapists said that they see definite improvement from yesterday to today, which is exactly what we want to see.  The speech therapist told us that he started swollowing a very little bit today.  That is absolutely a step in the right direction!

Little Buddy had an Opthomologist come and look at the back of his eyes today to try to determine what he can see, and he said that other than a small blood clot at the backof one his eyes, everything looks good.  The blood clot is most likely from the chest compressions that had to be done (they build pressure in the eyes), but it should break up and disappear on it's own, so it's not a concern.  Little Buddy still isn't tracking with his eyes, but that should come back in time.  So some very good news there, as well.

We are very happy with, and extremely grateful for, the great day our little buddy had!

Sunday & Monday Morning

Little Buddy has had a couple of good days.  We were concerned that he wasn't being able to empty his bladder by himself, so his dad and grandpa gave him a blessing yesterday morning.  Within hours Little Buddy was emptying his bladder and hasn't stopped since.  In fact, we are cruising through Pull-Ups like they are going out of style!  The power of the priesthood is so real, and we are incredibly thankful for it!  The next hurdle is to get Little Buddy to start swollowing on his own again.

He has also made progress in that his drain in his head (EVD tube) has been clamped to see if his body will be able to process his cerebralspinal fluid on its own.  He will get a CT scan tomorrow to see if there is too much liquid in his head.  If so, they will either open the tube again, or talk about putting in a permanent shunt.  If things look fine then he will get his tube out.

Little Buddy also got to go into the therapy gym for the first time this morning, and he did great!  He is working so hard to get his body to start responding to him.  Of course, he smiled and laughed through the whole therpay session. :)

Our Little Buddy continues to win hearts.  One of the residents that has been working with him has been rotated to a new area.  She isn't in charge of our little guy anymore, but she still came by today to see how he is doing.  She said that she left a note asking the next resident to take good care of her patients, and she put on the note, "Especially 'Little Buddy'" but then she didn't want any of the other parents to get offended in case they saw it, so she erased it.  But she said, "I still feel that way, though!"

My New Elmo PJs