Ched's Top 10 Activities to Enjoy While Stuck on Your Back...

Hi,

Its me...Chedner. Mom has been too preoccupied to post anything on the blog in a week, so I told her I would make some time in my busy social schedule to write. I thought I would share my list of interesting activities I have found that can be enjoyed when adults strap you down on a bed and tell you that you are not allowed to sit up, roll over or run down hallways. Let me first say that I do not understand why these people insist I have to stay on this bed...I'm feeling fine...really...

Okay, here is my top ten list:

#10 - I have decided that one of the best toys in this place is a stethescope. They are lots of fun and I have gotten my hands on almost every nurse's stethoscope at some point in the last 5 weeks.

#9 - I spent a lot of time staring at my photo collage and pretending to yell at my older brothers for all past incidents in which they treated me unfairly....this is the one time I get to win all arguments and always get to have the last word!

#8 - Watch "Open Season" at least twice a day and giggle hysterically everytime the bear gets a porcupine stuck to his butt.

#7 - Tatoo my face, head and arms with small smiley face stickers...the closest my mother will ever let me get to body art.

#6 - Swat at hordes of bubbles that are impossible to catch with my currently, uncoordinated hands. My mom seems to think its funny to see them stick all over the hospital room as they are Gymboree bubbles and don't pop easily. This woman seriously needs to take a break and get out more!

#5 - Squeeze and burst any and all styrofoam cups within grasp. This is especially entertaining if I can get a hold of one full of ice water while I am sitting on mom's lap. Always guaranteed to create a flurry of quick action! Mom was too busy cleaning up the floods to take any photos of this activity...

#4 - This is really a treat now that I have unlimited access to my ostomy bag! I have discovered that if I flick open the clip in just the right way, the nurses think that the bag has gotten caught on my external fixator (the pins in my hips) and accidently popped open. This is a fun way to get not only lots of attention, but also I get to be lifted out of my bed for a few minutes by at least three pretty nurses while getting a sponge bath. However, Mom has caught on to the trick and has not been pleased the last few times I tried this one.

#3 - I have a really cool Wiggles videos and a music toy with lots of buttons. Since I personally think that Greg, Anthony, Jeff and Murray are a few of the only truly gifted muscians and entertainers on the planet, I could listen to their work all day long. As an added benefit, I get to see the grown-ups' eyes cross in their head after hearing the first 5 songs.

#2 - Throw your pappy as far and as often as you can possibly manage. I have to say this is one of the most pleasurable activities I have these days. If I am really lucky, I sometimes hit a nurse or even Mom as they walk by my bed. You know the funny thing is...no matter how often I toss these things, everyone always just laughs and picks it up for me. I am rather insistent however on them washing the pappy thoroughly between tosses. You wouldn't believe all the germs floating around a hospital. It is a great place to get sick!

#1 - My favorite game this week has been making laps around the children's unit in a wagon. I have done my best to convince anyone who will listen for six weeks that I want to get out of this place. Mom has tried her best to placate me...she has failed. But, thanks to some incredibly inventive folks at JHH, I have been allowed to lie on my back in a wagon and now get to watch an incredible array of lights flash by as I zoom down the halls. It's not exactly escaping, but I can always pretend. Also, I am determined to do my utmost to make up for my mother's serious lack of exercise these past 5 weeks. Towards that end, I have heard that 17 laps equals one mile, so I have set her goal at 10 miles before we leave. I am cautiously optimistic...

For the serious bored and brave...While this last one isn't in my top ten, it is an option for desperate times. If you are feeling particularly bored and are really daring, you could try pulling any and all wires, tubes or patches that I can get my hands on. Most are taped down to thwart the best of my efforts, but I have managed to get a number of them loose. The best part of it is the crazy noises that start going off all around me. It is like hitting the jackpot in Vegas! Lights flashing, sirens and buzzers blaring and normally sane people dancing around frantically. Unfortunately, I have must post a disclaimer with this one. As my mom has been trying to teach me since I started getting into things I shouldn't....all actions have consequences and some can be quite miserable. I found out the hard way that pulling an NG tube is a very, very bad idea! Sadly, I also learned that what comes out, must go back in...

When all of this fails to entertain me or beat the boredom that often sets in around 4:00 pm every afternoon, I just demand to get up and sit with mom in the green chair. Now that she convinced the docs to let me out of traction, I can get up for short times. Even with my legs in an immobilizer wrap, I have found that nothing beats snuggling and sleeping to escape from the craziness.

Peace Out!

Ched

Enjoying the Snow...

Cyndie has recovered well from her cardiac procedure and has been enjoying the beautiful snow in PA. Her host mom, Colleen, sent us some great pictures! Cyndie will have one more follow-up appointment with her doctor before returning soon to her family in Haiti. We want to thank the doctors at Hershey Medical Center and her awesome host family for taking such great care of this sweet girl.

Status Report and Photos

Pharah has done wonderfully since her surgery. She is back home with her host family recuperating and have a great time with her host siblings. These two definitely look like fast friends!

This is Pharah at the hospital. Look at that sweet face! Thank you Julie for all the pictures you sent us!

Brenda and her host brother Lubens are also having a great time together. Brenda has done well since her surgery, but we are hoping she will begin to eat a bit better. She is still not eating as much as the doctors and her host mom, Kim would like.

Brenda is definitely enjoying all the snuggling and attention from Lubens.


The update on Chedner is a bit better. We struggled most of last week to keep him calm and in bed. He has been fighting all the meds he is being given to sedate him. We switched one on Thursday and upped two that we hoped might help him lay still. The first day or so after the switch, we saw marked improvement. Now, he is beginning to be awake again for very long stretches and is struggling a bit. Time will tell. He still has 2 1/2 weeks of traction before he gets the pins out and we can pick him up. I knew standing beside him and not just picking him up to comfort him was going to be difficult, but I will say I underestimated how difficult it really would be. He is often frustrated and angry at me as I am suppose to be his rescuer and I won't just take him away from all of this. He points to the window and the door and yells, "up, up, up!" or "go, go, go!" and all I can say is not yet. He is definitely at the hardest age for this as he is used to be being very busy and his language is just not good enough yet to explain this whole ordeal to him. He often lays and just watches TV if I am not beside him, but he won't eat anything for anyone but me. To be honest, he isn't eating much for me either. We are now feeding him by an NG tube throughout the day and night. He has definitely lost some weight.

In the end, there truly was no choice about having this procedure and it will be worth the tears and frustrations for both of us when it is done. This surgery is just one of a staged process, but thankfully the others are not as extensive and the hospital stays are shorter. We are blessed that we have been able to be here at Johns Hopkins as they are truly the world's best at this repairing this condition. Dr. Gearhart, his staff and the nurses here are incredible. The support of the folks at the Children's House and Child Life have definitely made the stay easier on all of us.

That's the status report today. Sorry no photos of Chedner as I was too busy dodging the crackers he was throwing at me to snap the picture! Maybe this later this week.....

Message from Vanessa

I am very happy to send this email. It was a hard trip home, but I am so thankful for the detour. My detour took me through PA and this is where Joanise needed to go. We wereable to contact the host parents and see if they wanted to meet us at the airport. Unfortunately, we were very late getting in, so I was invited to spend the night with Greg, Georganne and Gwen. They took me back to the airport the very next morning. Where I found out I had to fly to Charolette before I would then get to Roanoke. (I was not to happy) But went with it. Got to Charlotte fine had my 3 hour layover got on our plane and were taxing to take off when the engine caught fire. Yep that is what I said. So with a sudden stop door thrown open I helped the elderly lady behind me out and away from the plane. We all made it out ok and the Staff got the fire under control very quickly.
The whole time I kept saying thank you lord I did not have Joinise with me. It would have been impossible to get her off the plane with out jarring her head. God was watching out for us.

Joanise arrived in PA has been with her host family since last Friday and they have fallen in love with her. We want to thank the airline personal of American Airlines and US Airways. Joinise was able to make her trips with no problems. She will go for her pre surgery appointment next week and have surgery the week after that.

Cyndie who arrived with Ben and Jen on Jan. 26 had her heart surgery today. She came though the two hour procedure great. I am told she will be able to return home within the next 6 weeks. It is so wonderful that God has opened so many doors for these precious children. Please keep them and all of the children who are waiting for surgery in your prayers. .
Thanks for the prayers
love V

Pharah's Surgery

Pharah had her surgery on Thursday and all went very well. In fact, her host mom reports that she did not even need to spend any time in intensive care, but was able to go directly to a regular room. She was beginning to drink some and seems well on the road to recovery. Pharah had a massive head before surgery and thankfully that seems to be shrinking down some already. The message today was that they are headed home and rest and recuperate!

Ched - Week 2 plus 2 days

What a difference a day makes....I don't know who said that but they were incredibly astute.

Chedner is on the warpath. He has decided that his work is done here in Baltimore and its time to pack up the toys and go home! And he literally tried to sit up and get out of bed...even in traction and pins! While I am making a joke, the last 48 hours have not been funny at all. Ched is moving constantly and is throwing tantrums hourly. He should be seriously sedated, but is merely laughing at our efforts to put him out. He fights closing his eyes if at all possible. At first he just was wiggling in bed alot but now he has taken his dissatisfaction to greater levels and has begun "levitating" off the bed. Despite emergency calls for more help, Ched chewed through two more medication choices today. We have maxed out all the routine meds they normally use and we've moved on to other stronger drugs. I knew two year olds (and this two year old boy in particular) have strong wills but I am amazed at his endurance.

Please say some prayers that this last medication will calm him a bit and keep things quiet. The concern is the more medication we give him to put him out, the higher the risk that he will stop breathing on his own and need assistance. That situation would mean we would need to return to the intensive care unit where we truly do not want to be. We have about four more weeks of traction to get through and I think I may be to the point that I'm going to start insisting on some of that medication be given to me!