Since our last posting, Kyra's replacement fluid was turned down to 90 cc/hr and we started bolus feeds. Entral bolus feeds are still given thru the g-tube but differs from a continous feed. A bolus feed involves using a syringe to give a quantity of food into the feeding tube at regular intervals. In th past this method was not successful. We would get maybe 20 cc in and clamp her g-tube only to have her bring it up within the hour. Now I am happy to announce Kyra tolerates 60cc in a two hour time frame. This is wonderful for Kyra - we are able to disconnect her from one line and provide Kyra with more time for mobility. Kyra has become very aware of her tubes and their limits. When she comes off of them even for a few hours ... she is all over the room exploring and playing with her siblings. We are even trying to get her used to wearing her backpack. She tolerates this some days - others she is annoyed by the bag.

The last couple days Kyra has decided she is going to eat again. She had regressed, fighting us for every bite. However, Nurse Becky, has found that she can get her to eat by bargaining toys with Kyra - no bites, no toys. It is working. Today Kyra enjoyed a small taste of a sucker - a halloween treat! She said "yum-yum" as she licked the sucker..... Speaking of Halloween - check out our lil' pumpkin!

Kyra's vocabulary is growing every day. She attempts to repeat every word and every sound she hears. She can tell you what a cow says. So cute to watch her position her lips first then make the sound. She can say "pa-pop" and calls Kaden "Bubba" Just today as Mikahla was rushing by her she called out "Ta-ba" Mikahla stopped in her tracks. "No, no" has also been perfected while she shakes her finger repeatedly.

We have been working on her tummy time. Not a fan of this position, but she is beginning to tolerate this a little more each day. I was concerned with Kyra's mobility due to her reluctancy to go into a crawling position, but Kyra always finds her own way. She has mastered the "scoot" She crosses her legs indian style and maneuvers across the floor on her bottom.

Almost three months at home now. I have to say our routines have provided me with more time with all three children. I am so pleased to announce Kaden has joined flag football and I actually get to see a few games. Kory and I went to a class reunion a few weeks ago. First time I have been more than 10 minutes away from home without a nurse in place. ( Thanks Cher!!!) Prior to Kyra's discharge the Clinic nursing staff told us, we would get home and wonder why we were ever so nervous. Well, I still hold my breath every now and then, but I honestly believe I could mix TPN with my eyes closed.

Good News - Kyra gained weight! Before turning down the TPN and replacement fluid rate Kyra weighed 21 lbs. 10.5 oz. She is now at 22 lbs. 7 oz. WOW! WOW! WOW - check out her bowel! I know it seems I am bit too excited and I am. But when you get good news of ANY kind it is cause for celebration.

We have been working with Kyra on using sign language to communicate. She has successfully mastered the words "dad" and "more." Yesterday afternoon Kyra and I were able to take advantage of a beautiful day and went for a walk around the neighborhood. She was startled a bit by the breeze but that soon passed as she looked at the trees and birds with wide eyes. It is always an renewed sense of innocence when you watch a child smile and take in the little things we sometimes fail to appreciate. As we ended our walk Kyra was growing pretty tired, rubbing her eyes. It was clearly time for a nap. As I leaned over to pick her up from the stroller, Kyra repeatedly tapped her fingers together and verbally attempted the words "more, more." Once again Kyra so simply reminded me of the little things that turn into BIG moments in our lives.

On Monday we turned down Kyra's TPN and replacement fluid rate. Our hope is that she will maintain her weight or have very little weight loss. This is a good move for Kyra. TPN is hard on the liver. We must keep Kyra's liver in good shape in order to ward off a need for a transplant. We are very happy to know that Kyra is doing well enough so soon after discharge that we have this opportunity to turn down her rates. On our next visit to the Clinic we will find out how Kyra has tolerated this change.

Kyra has been receiving OTPT at home for two weeks now. It is so amazing how quickly her vocabulary is progressing. It seems each day she is saying a new word. She makes me laugh watching her hold her little phone while waving at the same time and babbling "he-yo" and "ba-bye" She is also beginning to use sign language to communicate with us.

Kyra is off of ALL pumps for three hours a night and is utilizing her time moving down the hall in her walker. She has not mastered moving foward but she is fast to push backwards. It is cute to watch her go to the end of the hall, she yells out and Mikahla turns her around. They repeat this several times a night. I am not sure who enjoys this game more - (them or me)

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"

Good times with our "She-Ma" & "Pop-Pop"

Not since Kyra's birthday party at the hospital have we been able to have all grandparents in the same room with all three children. This photo is worth a million smiles!