Thursday, August 25, 2011

Standing up, cruzing around

Well, kinda.

Today was about as eventful as it's gotten so far for Levi's rehabilitation. For PT they brought this contraption (shown above) that starts him off flat, secures him in, and then gradually lifts to 90 degrees. Today we got to about 70 degrees and then went for a cruise through the unit and for a look at the play room. Even though Levi's verbal response when asked if he liked it was, "no", the therapist and I both agreed that he really did like it. He also requested to hold his blanket for the big event, my boy loves his blanket.

I have to say, I miss all our old docs and nurses in the PICU. They were becoming like family, I mean, we were with them 24/7. The IMU peps are lovely and all, but it makes me much more eager to get to our final destination (rehab).

I've been slightly hesitant to post lately, as I feel like all of my posts would be repeating the same thing over and over again. Fever up, fever down, sodium stable, sodium low, heart rate high, heart rate better, threw up, didn't sleep, not eating, eating better and grumpy. I feel like once anything is better for any moment of time, I have learned that it can turn the other way before I could even expect it. It's hard not to feel discouraged and I know he is making progress, but I guess it is hard because it feels so slow. So slow that you can't tell it is actually happening until you take a step back from the day to day grind. It's nights like these that I am thankful that I can do just that. I have to remind myself that he is getting better and he will be my little boy who can cuddle in my lap once again, but just not tomorrow . . .or the next day.

Tonight, Kade and I are home together. We are trying to get this little guy back on some sort of decent sleep schedule and even get him back to the habit of sleeping in his own bed. I was up stairs rocking in the glider in his room while he was playing in the bath. I wasn't feel that great and I was just asking the Lord for the strength I didn't feel I had to get Kade down for the night. I was relishing in a few moments of quiet and I thought my little angel was just lost in his imagination to be that quiet for that long, so I thought I'd be a good idea for me to give a gander and check on him. Oh dear. I see an empty bottle of body wash and a very soapy tub and a very entertained 4 year old. Erg, I just bought that. Fortunately, I was too tired to really worry about it and I guess it was worth the few moments of quiet it gave me to prepare for the evening. So, since so many of you asked if there is anything I need. There is. Children's hair and body wash.

Kade then gave me the gift that I needed tonight, he went to sleep with no hesitation in his own bed. Thank you Kade, now I am really glad I was so easy on you for the body wash thing.

Thanks for still following along and for still praying and for sticking with us for the long road ahead.



  1. Kara...I think documenting everything Levi is going through is something we all are wanting to read. We continue to pray and thanks for posting pics of the little guy.

    By the may get a year supply of children's hair supply from those who are reading. :)


  2. He is making such great progress. I enjoy every little update, even though I've never met your dear family in person. Even the fever updates. Those little things mean a lot to you so they mean a lot to the people praying for Levi. Thanks for sharing the journey.

  3. Oh sweet friend, your post brought me right there to feeling te day with you. You are doing a great job as a mom in each of these situations. Loving your kids in each moment and laying all the struggles and emotions on the Lord. We are still praying.

  4. please do not believe the enemies lies when you want to post any updates or repeats. We have enjoyed reading them and praying for you all every day. Levi has the sweetest face!

  5. Yes inlove reading your posts and can only imagine how exhausted and stressed you all feel. But I am so thankful that God heard our prayers for your precious Levi. Rejoicing in that tge cancer is gone and God is healing your son. It has been quite a journey and you are still on this road, but the Lord is with you and will never leave nor forsake you. Keep giving Him your burdens and crying out for whatever you need in the moment.
    I so love you ask for body wash. That is a need we can meet and it feels good to be able to help in some small way.
    Kara though I have never met you, I have prayed for you for years, ad part if your Mom's Mom's In Touch group. We are all lifting you and your family up to Jesus and interceding on your behalf. He is faithful and will show Himself mighty on behalf of Levi and your family. Keep walking by faith, Autumn will be a great new season :). Love you

  6. I'll be praying for strength for you guys and the ability to regain energy to make it through the day and feel strong:)

  7. Kara, your posts never get old. I check up on Levi every day and love hearing about how you, Dan and Kade are doing. You are AMAZING!I love you, my friend, and continue to pray for you!

  8. I agree with all the previous posts! My youngest son resembles Levi so much. I check regularly on his progress. I'm sending prayers and good vibes from here in Encinitas!

  9. it makes me SO happy that Levi got to go outside!! and you guys too :) as beautiful as a view you have, (truly breathtaking) nothing beats the power of fresh air and moving around. change of scenery is everything. love you and please keep posting. we love to hear what's happening in your world.

  10. Levi Kade Dan and Kara,
    I have been reading your blog since the day I heard the news. I can't even imagine what you two are going through. All I know is that you are two very strong individuals and Levi is in our prayers daily. Stay strong and have faith that Levi will stay as strong as the people who made him. Kieran I and Kim Can't wait until Levi and Kade can have another play date and rock the playground!!!!!
    Love and Strength,
    Deron and Kim