IVIG Today

We are sitting at the hospital waiting for the IVIG. The infusion runs for four hours and makes for a long day. But we are fortunate that Kyra is also able to see her specialists during her infusion. Kyra has a GREAT TEAM dedicated to her care. Kyra's conditions are extremely complicated. She is not a regular order of "fries and a small shake." There are so many factors to think of when examining her care. The collaboration of her "team" is REMARKABLE!!!!

As a mother of a "sick" child you are always pleased and yet somewhat terrified to hear the words "let's try." But today Dr. Radhakrishnan said "try" turning down Kyra's TPN and replacement fluid rate. I am so eager to try this approach. With this step we will see how she fluctuates in weight. If all goes well we may find that we can try to turn the TPN down again. Great relief for Kyra's liver. Kyra will have to prove that she is ready for this and hopefully keep taking oral feeds. These are small steps that have big rewards!

Kory is Kory. During Dr. Radhadrishnan's visit today he utilitized the time to get some advice on the anatomy class he is teaching this year. I just took my notes on Kyra's changes and smiled remembering a moment that brings me to laugh now but at the time I am sure it was seen as inapproriate, especially for the physicians involved... During the discovery of Kyra's hydrocephalus Kory and I were in the waiting room, awaiting the arrival of the neurosurgeons to explain Kyra's condition and the surgical procedures available to hopefully eleviate the fluid causing pressure to her brain. The tv was on in the waiting area and it was just announced that Obama was looking at Dr. Steven Nissen, Cleveland Clinic Cardiac Surgeon, as the Surgeon General. Kory was blown away. Now in walk the Neurosurgeons, they sit down and delivery what is devistating news to us about Kyra's "new " condition. I get very emotional wondering what more can she endure. And well Kory is Kory. He is in the same room, he just heard the same news, but he copes with his emotions VERY differently... He asks the surgeons if they know Dr. Steven Nissen. They try to cover but I can see them looking at Kory like "is this guy for real. We just delivered frightening news to a parent and all he can do is ask about Dr. Nissen." We can laugh now but I'd be willing to bet they were wondering where on earth is this guy's head.

CELEBRATE - WE HAVE NIGHT NURSING!

YEAH we have night nursing! Just in time for Kory and the kids to head back to school. Things are falling into place. Kyra is doing wonderful. She has been back to the Clinic twice for her IVIG infusions and her physicians are very pleased with how well she is doing. We are hoping that soon we will be able to cut back on her TPN. Our hurdle to overcome - solid foods - we are working hard on this.

Kaden and Mikahla are getting more comfortable with Kyra. On any given night I can find Mikahla heading to Kyra's room (after I put her to bed) to play. I just can't bring myself to stop her. I watch outside the door listening to the two of them laughing. I cherish every little giggle. I have been pleasantly surprised with the way Mikahla is with Kyra. She has never been the "touchy, feely" type - getting a hug is sometimes a chore. But when she is with Kyra there is this gentle, nurturing soul. Kaden is always the entertainer. He gets out his guitar and plays a little toon or dances for Kyra. Just last night he was performing magic for us. Kyra enjoyed watching him shuffle his cups around.



Kaden & Kyra playing "peek-a-boo"