So long no see...

Hi,

so, yes, I (Jerry) have taken over and I'm already late on my first posting. Sorry about that: life insists in taking over my free time. :)

First: we celebrated little buddy's birthday the other day! He turned 4. It was a happy party, with everybody there, and he got a bunch of presents and tons of love from everyone. He was sincerely happy, and I could not resist the fleeting thought that a possibility existed that we wouldn't have that party. How grateful we are to a loving Heavenly Father that allowed us the privilege of caring for Little Buddy longer!

Little buddy (LB from now on) is doing great. He's developing more strength and purposeful movement. He's now able to move both arms, wave goodbye, and (with some work) pass objects from one hand to the other. That is important because it means he's being able to manage two extremities simultaneously--big win there. He's also holding his head straight for longer periods of time. He remembered how to lock his knees, so he can stand for a few seconds with help for balance. And, lastly, he is now able to lift his bum from the bed when lying on his back: his hamstrings and gluts are getting stronger.

We have now (thanks for the idea, Uncle J!) a rudimentary system of communication: we ask him a yes/no question and he answers by giving us a thumbs-up if the answer is yes. He has added an element of emphasis to the thumbs-up: when he really wants something, his thumb comes up faster!

He has taken 8 doses of radiation and started his chemotherapy last week. He's taking one of four or five drugs right now, called Vincristine. This drug help the radiation be more effective, and that's the reason they give it along with it.

LB has been throwing up more than usual, but that's a known side-effect of the treatment. We're giving him a new medicine to avoid nausea starting today or tomorrow, so we'll see how he goes with that.

Also, he's taking his swallowing test today. If he passes (he needs a C+ or better.........just kidding) then we'll start introducing food by mouth. That's VERY exciting, because he'll start exercising those tongue/throat muscles more, and that might help his speech recovery too.

Most important: through this all, he's been happy. He gets frustrated sometimes, but besides those rare moments, he is our happy, smiley boy. He has been an example to all of us about how to be happy regardless of opposition. He is a living reminder that circumstances are what we make of them, and that we can decide how to face them and feel about them. Talk about lemons and lemonade!

Thank you all for your continuous support and prayers, your meals and your time, your sacrifices and empathy. Our trial has been more bearable because of you.

May the Lord bless you according to your generosity, sacrifice and concern in our behalf.

Us.

Home!

Our Little Buddy is home!  He is so happy to be here!  And we, of course, are so happy to have him back with us!  It is a lot of work, especially for me now that I'm nurse/therapist/mom, but it is worth it for him to be home.

We still have our ups and downs.  Some days go better than others.  Little Buddy has an eye infection today that is really bothering him, and he is starting to feel the effects of the radiation treatments, and has been sleeping most of the day.  It will be a long hard six weeks, then a break for about four weeks, and then back up to Primary Children's for his first chemotherapy treatment.  It's not going to be an easy year, but all the love and support we are receiving from wonderful friends and family, as well as from above will help us make it through.

I've made a hard decision that I have been agonizing over for a few days.  I am turning the blog over to my husband, who plans to update it every Sunday.  As Little Buddy gets sicker and sicker from his radiation treatments, I am getting more and more sad.  With my mother feelings so close to the surface it is being hard for me to post on the blog.  I hope all of you understand.  I will still probably post from time to time, but will leave most of it to "Daddy."  I want you all to know how very much I appreciate all of the faith, prayers, and love you have sent out way.  It has made all the difference in the world!  Thank you all so much!  Love, Jana

Going home!

Sorry it's been so long since I updated this.  We've been pretty busy!  Little Buddy did settle in to his new room, and has begun to like it here.  The nurses are wonderful, and his room is more private and quieter.   That has been nice.

Our little friend started his radiation therapy on Thursday.  It is making him tired, and he has been feeling a little sick, but he still has his positive attitude.

The most positive thing is that we have been feeling that it is time to take our little buddy home.  It has taken a lot of work and planning, but we hope to take him home this afternoon.  He is still on his feeding tube and needs therapy, but that will all be done from home now.  Between home health, Aunt LeAnn (an RN), and a mom and dad who have a huge learning curve ahead of him, he'll still be well taken care of.  We'll also still be coming up for radiation therapy every day, but that's not anything we haven't been doing anyway, and we'll all have more time together as a family.  That will make all the difference for the whole family!

We'll still be updating the blog on Little Buddy's progress, but probably not everyday, as there won't be as much to tell. 

A funny thing that just happened: Little Buddy was laying in his bed here at the hospital, and he let out a huge sneeze.  He had a pool of saliva in his mouth that flew three or four inches in the air, and then succomed to gravity and hit him right in the face.  He started laughing so hard that his whole face turned red.  It was very funny and very cute.

So, hopefully, my next post will be from my computer at home.  Wish us luck!  :)

Tuesday

This was a bit of a hard day.  Little Buddy did well with his therapies, but then he got moved upstairs to the ICS unit (Immunocompromised Services Unit) where all of the kids with cancer and organ transplants are.  It is much better for him to be up here, because he will much better shielded from possible sickness that could really do him damage (especially since it is RSV season here in the hospital), but it was a hard move from both him and Mom.  It was a hard move for him because his room in NTU had become "home" for him.  He was familiar with the room, the nurses, etc.  When he came up here yesterday I could tell that he felt very nervous about the whole thing.  I took him to see the "big fish" and other things in the hospital he likes to see to try to help him feel more settled, but it only helped marginally.  I'm sure he'll be fine with things soon, however.

It was a hard day for Mom because going onto the ICS/cancer floor brought it home even more that we aren't here in the hospital just for Little Buddy to be getting therapy.  We are here for a much more serious reason.  As I saw the children here with cancer and the characteristic bald heads, I got tears in my eyes realizing that my little guy is that sick, too.

So, there are good days, and there are days that are a little bit harder, but that is just how it is when you or your child is very sick.  This was one of the harder days.

Monday

Today was another good day for our sweet little guy.  I was so happy when I got to the hospital this morning and his nurse told me that Little Buddy had stuck out his tongue on command.  That is the first time he's done it, and is a huge step forward in being able to eat and talk again.  Of course, after that news Little Buddy and I stuck our tongues out at each other quite a few times during the day! :)

During music therapy this morning, the therapist was purposefully trying to startle Little Buddy to see what his startle reflex was doing, and he startled right on que - again for the first time.  He did it repeatedly, so we know it was for real.  She said, "I can't even tell you what a good sign that is!"

When I was getting Little Buddy in and out of his wheel chair today for his daily ride and for his bath I told him that I wanted him to give me a hug.  He wasn't able to completely put his arms around me, but I felt definite pressure from him and I know that he was hugging me.  I loved it!

At the end of his physical therapy session today, he was standing (with a LOT of help from his therapist) and he lifted up his leg as if he wanted to walk over to me.  Again, with a lot of help, he "walked" over to me and gave me a hug.  He is working so hard to get back to where he wants his body to be!

Things continue to go in the right direction, and our little friend never fails to astound his doctors and therapists by the progress he is making.  And we couldn't be happier about it!  We are so grateful for the many prayers and the blessings he is receiving from above!!

Sunday

Little buddy got a visit from his great aunts today (Grandma's sisters).  They were excited to see that he is doing such a good job moving his head from side to side, as well as moving his arms and legs around.  He can't yet control his movements very well, but he is getting more and more active all the time.  Phyiscal and Occupational therapy are working hard with him to help his brain remember how to control his movements and get is body to do what he wants it to do.

Even though Little Buddy's body isn't doing what he wants it to, his mind is still as sharp as anything.  He laughs at jokes and the look in his eyes let us know that his mind is still working well. We were very excited when we opened a surprise package from Two Little Hands Productions yesterday.  Somehow they found out about our little boy, and they sent us a wonderful collection of "Signing Time!" DVDs and CDs as a gift to teach Little Buddy (and his mom and dad) American Sign Language, so he can get the words stuck in his head out and communicate with us again.  We can't wait!

I know I say this almost every day, but thank you so much, Everyone, for all you are doing to support and help our family.  Your love, service, gifts, and especially faith and prayers are helping us all in so many ways.  We don't know how we would get through all of this without you!

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!