Adding a twist

I need to put together a better post. Something made up of more than sad depressing news.  I'm going to toss one out tonight with a touch of fact be it good or bad, a twist of smiles, and a dash of giggles.

I have a problem with keeping my chin up and seeing the positive at each turn... Just call me Eeyore.. I never forget to find the good but it takes me a bit longer than most when I get overwhelmed. And I get overwhelmed often.. But here you go... Cully >>>>

  Cully just can not seem to get his potassium level up regardless of what the team at Children's Hospital does. And the team has told us they think they may have an answer..  It looks like it is Cully's kidneys. And the ACTH may be a contributor. The ACTH treatment is continuing at this point but we do not know what will come tomorrow. His calcium levels are low as well and the "Kidney team?" visited and explained that it is a sign of kidney problems.  So we wait to learn what to do about that....

  Digestive system has not been moving but we have signs that it is getting back to work now. We hope to see even better signs tomorrow..

  Cully is beginning to snap out of his TEENAGER stage where all he does is lay in bed all day and whine. After sleeping the whole week away we found Cully playing with his brothers for a few minutes last night. This evening he and I took a stroll around the 6th floor in his stroller with Cully wearing a mask. We even made a pit stop at the play room and he had a few minutes of fun. He even stood up on his own two feet and walked a bit. So while he is still spending most of his time unconscious in his bed he is also showing better signs of alertness and playfulness. 

  Cully grew. He is HUGE and this is just in comparison to yesterday. It doesn't even seem real but he is too much to lift, to big to wear any of his close and he is strong as an ox be it sick or healthy.  Eyes are somewhat swollen closed but nothing uncomfortable for him. This is most likely his medication.

  This morning we gained one more hurdle. Cully's left arm is shaking from time to time. The neuro team checked him out and it is not a seizure. It does come and go but boy does this get Cully MAD! I handed him the Ipad and he could not get his arm to function so he began yelling at it "NO NO STOP IT"  The crew is working on that one as well and this could be something as simple as a muscle spasm due to his low levels or his medications.

 I had a nice evening with him while he sat on my lap for a moment and the little strolls we took, the singing to a Barney video and he even gladly accepted a backrub from me. When I went to leave tonight he was laying on his belly and he kept shuffling his huge self to the side. We had no idea what he was doing but in the end he got his face up against the bars of the crib and pushed his mammoth chubby cheek through so I could give him a kiss goodbye. That took a lot of work (and a lot of time) to move that large of a load across the bed just for a kiss and it made it all the more enjoyable.

  Now..... We have had several people treat us so well these past days. Emails, calls and texts. Even a couple emotional posts on Facebook in our favor. Julie and I can not clearly explain what it means to us to have people, friends  be there for us like this. We have needed it too. Especially me as I get in my crazy state. Thank you for being there with the offers of help, the checking in on us, and keeping Cully in your thoughts. We are learning what true friends are all about.  

 Things are improving in ways and the more we learn the closer we will be to making things right. I would place my bet on Cully returning home soon in much better health and making us all laugh with his goofy acts.

  On another note... Tonight I made a stop on the way home and picked up Cully's big sister Elora. Now when I say big sister I mean BIG SISTER.. Elora is due to make me a Grandpa any minute. YES ! GRANDPA !.. Now I don't know much about this grandpa thing but I think it means that I get a discount on my coffee, am supposed to leave my turn signal on at all times to announce that I belong to the *Grandpa Club* and that I now have a responsibility to double check each and every one of my receipts and contest them when incorrect by even as much as 1 penny.   Why are you doing this to me Elora???  I'm glad you are here..