THE BIG MOVE

Well, they finally moved us tonight. Nini and Baba, Nana and Papa - we're on the third floor of the giraffe wing now (I think room 3010) - good luck finding us! We're guessing even mommy will have trouble finding us tomorrow. . . We've gone from the plush accomodations provided in the PICU to the not-so-plush surgical recovery floor. Keller probably won't notice the spartan accomodations, so no big deal. Ok, I admit it, I'm slightly concerned that the bed I have to sleep in tonight is half my size, but that's a personal problem. . . Keller has hit a few more milestones tonight. He is getting more and more anxious to get back to his old ways and actually tried to stand up in his bed this evening, which we took as a good sign. He also had a peak or two out of his left eye. More patty-cake and peekaboo played as well. Can I say that he also had his first bowel movement today? This becomes a permissible subject during a hospital stay or camping trip, right? Anyway, we should get the drainage tube out tomorrow, which may mean that they can also take out his last IV. I suspect Keller is more concerned with the IV, but I think I speak for the rest of us when I say that we're all looking forward to having that tube taken out, none of us more so than Jim Bob. He looked to be on the verge of passing out today when Keller started yanking on it like a madman!

Megan and Adam Claypool said . . . Hillary, Mark and Keller- We were so happy to hear everything was going so well. Keller is amazing and so are his parents. Our thoughts from DSM are with all of you! Love and get well fast wishes, Megan and Adam

Cheri Kulik said . . . We are so happy to hear that Keller is doing well - making progress every day. You have been in my thoughts many times this week. When you experience something like what you are going through right now it becomes very clear what things are most important in life. Looking forward to reading more good news! Love, Cheri and Tony

Cousin Quinn said. . .Dear Keller. I love you. dont worry. i have been to the hospital before and I was not scared. I loved it. I miss you. I wish you could come back to your home soon so i can play with you. Dont cry. Dear Hillary and Mark -I hope your baby is going to feel better. And I love you. I wish you could come to my house. And I love Keller. Dear Nana and Papa - I wish the baby will feel better. I love you too nana and papa. I hope you will stay at that hospital. I wish Keller can feel better. And I wish he can get out of that hospital. and thats it! Love Quinn

Josh and Susie Kimelman said...I am speechless.....so thankful to you for keeping us updated on Keller, his surgery, recovery, and the unbelievable photos...I am checking my computer for updates and am so glad to hear Keller is progressing so well....the tennis gang all wanted to hear how things are going and I was pleased to update them...they all send their best...you are all to be commended ..we will continue to pray for Keller....Love ....Susie and Josh

Hilarey Kirsner said . . . Hey Hill-I'm so glad everything went well with his surgery. I was taking a look at the photographs Mark posted and it's absolutely amazing. It's also good to hear he's acting like himself, even though he's in a big scary hospital. Do you think he has any idea what's going on? I know he will really appreciate you documenting this process when he gets older. Give everyone my love and I'll check in to see how things are going too.Love,Hil

We wanted to thank Paul Davison and Katie Nielsen for stopping by to say hello yesterday. Once again, seeing some familiar faces brightened our day. Both Paul and Katie, as well as Andrew, spend a lot of working hours here at Children's Hospital. What an amazing place to work! We can certainly see that each of you must fit in wonderfully with the extremely dedicated, deeply compassionate people that we have encountered during our stay at Children's. You guys are incredible!

BABY STEPS

Keller continues to break new ground and reach personal milestones. This morning he opened his eye for the first time since the surgery. While he struggled to get a look at mom and dad, it was an Elmo DVD that coaxed him out of his darkened world. We're not jealous - he spent the next half hour sitting up, swiveling his head back and forth from mom to dad and clapping his hands in celebration of the fact that he's not completely blind. Needless to say this was overwelmingly touching for mom and dad, and we think we even caught a few tears from our nurse, Daria. He's only looking through a very small slit in his right eye, and the swelling will likely increase after they pull out his drainage tube to the point where he is again unable to see, but being able to catch glimpses of people he knows has helped to lessen Keller's frustration. He's almost back to his normal food intake and is really enjoying being held and rocked by mom. The attending let us know today that we'll likely spend another night in the intensive care unit, as there are still no open beds on the surgical recovery floor. Again, we love the extra attention of the PICU, so you won't hear us complaining. Still, moving to a different floor will mean less restrictive rules regarding visitors, which would be a welcome change for Nini, Baba, Nana and Papa. Only two or three of us are allowed to be in the room with Keller at one time, so everyone is spending a lot of time in the PICU waiting area. Nini and Nana are master Sudoku players by now and I think Baba and Papa have each gone through a book or two. For us, this blog has become our saving grace.

Sarah Friedland said . . . Keller you are the man! It is truly amazing given all that you have just gone through and at such a young age you are able to give your mom and dad hope and rays of light! Hillary and Mark, thank you for the pictures and CT scans, it really helps us understand what Keller has just been through. Stay strong and positive and know that people from all over are sending well wishes, love and prayers your way. Love, Sarah & Adam

Michelle Evans said . . . Mark & Hillary...What a journey little Keller has been through this week. Thank you for keeping us all up to date with his progress. Its very emotional to see the pictures of Keller after the surgery. I can't imagine how it must be for you and your family. You two are incredibly strong...I am truly amazed. Take care...I'll be thinking about you this week. ~Michelle

Tim Cusick said . . . The CT scans were amazing to look at. Mark - thank you for providing the helpful notes. I'm so pleased to hear that Keller is doing well. Thank you for all of the updates. I'll continue to check for updates

David Nelson said . . . Keller, you're the man! You've got a very proud uncle in Chicago that's rooting you on every step of the way. Hillary and Mark, thanks for everything you have done to keep everyone informed.

Elsy and Paul said... Mark and Hillary - it is so great to hear that Keller is doing well. Thank you so much for the updates on him, it's amazing to see all that has been done to him and hear that he is on the road to recovery. thank you so much for sharing with all of us. Lot's of love - Elsy and Paul

A PEACEFUL NIGHT

Good morning! Keller had a great night--slept soundly and ate a lot, which meant that Mom got to do the same. Yesterday we heard that his drainage tube could come out today--I still hear that from the neurosurgeons, but the plastics team feels that tomorrow might be better. Perhaps we'll learn more and get a final decision during this morning's rounds. We're still waiting for an open bed on the surgery recovery floor, but having the undivided attention on the PICU squad is worth the wait.

Hilarey Kirsner said... Hi Hill, Mark and Keller- I have been thinking of you all non-stop since May 1. You have so much courage- I'm sure it's the hardest thing in the world to see your baby go into surgery. Luckily- as you said- this will be such a minute part of his life, even though it seems like such a big deal right now. He will grow up to be a very handsome little guy! I will continue to read the blog- so I look foward to reading about his progress. I'm glad you have family and friends around to help out, but if there is anything I can do, please let me know!All my love, Kirsner

Great Grandmother Clause said... I was finally able to get through to your web site and it is so exciting to hear the wonderful news.!I realize you have all gone through so much, but be assured that all of us have kept you in our prayers constantly. It is also wonderful that you had so much family with you through this trying time and such great help from Doctors and Nurses. This is all so exciting and your idea for the web site is miraculous. love, grandmother Clause and best wishes to my GREAT Grand SON

Andrew & Chandra Mullenix said... These scans (with Mark's notes) are amazing in helping us to understand the doctors' work -and what joy for you to be seeing Keller's playful self come through so early in recovery! We continue to check back often for your updates, and are so grateful things are going so well...

Brooke and Mike Miller said... To Mark and Hillary, Thank you so much for letting us be a part of this event in Keller's life. We would not have missed it for the world and are so glad that everything is going well. For those of you who couldn't be here, you would be amazed at how incredible Mark and Hillary have been. Keller is very lucky to have such strong, amazing parents. They have not only made it easier for Keller but also easier for those of us who were supposed to be helping them. This hospital has also been incredible. Little things all around like trains, whales, bright colors and amazing staff help make this place a little easier for young children to feel comfortable in. Just to give you an idea of how we, the family, have handled everything, we pretty much broke every rule in every room we were in-most unintentional. We had liquid where we were not supposed to, we answered calls and made them where the was no cell phone use and we stayed well past visiting hours the first night-about par for our families. Again, thank you Mark and Hillary for the chance to be part of Keller's life and for being the pillars that you have been throughout everything, Keller is lucky and blessed to have you in his life. Brooke and Mike