Since my last post, Kyra was hospitalized again. This time for six LONG days due to a gram-negative bacteria. Trying to keep her entertained in the hospital was a job in itself. If I didn't already appreciate our home nursing now I definetly know just how much I could not make it without them. Whew! I quickly realized that Kyra has been constantly engaged with activity and entertainment from at least one person. I guess we were trying to make up for lost time during her stay in the NICU. Now, I make sure she spends a little time playing by herself. I have actually warned Mikahla "no I am watching her and she does not need anyone to play with now." Mikahla doesn't get it yet, but she is approaching pre-teen years and will appreciate my strategy later. As for Kyra's bug, no need to replace the line. She recovered and we put good use of our time in the hospital. Kyra began taking water out of a bottle - now we are transitioning to a cup. She is actually asking for a bottle now. She is also eating a bit more. We are seeing her throw a fit if we do not get the cup or food in fast enough - ahh a typical toddler emerges.

I have realized I have not added photos of Kyra in a while. She is growing so fast and learning so many new things. She is our little greeter. Anytime we walk in the room, we hear this sweet little girl say "hi." and if not acknowledged quickly enough you hear a very loud and stern "HI!" She makes her presence known. Here are some big girl photos.


SOOO BIG!


FEEDING HER BABY


BABY HAS A G-TUBE TOO. THANKS NURSE BECKY!

"IT IS A WONDERFUL LIFE"

I have watched the movie "It is a wonderful life" so many times. I hold back tears and smile everytime I hear the bell ring.

It has been one year ago when we spent our holidays huddled around Kyra in prayer as she struggled to get thru two neurosurgeries back to back. I held onto hope but honestly I did not know if she was going to make it thru those days. To look at her today, you could never imagine the path traveled. She is a bright child, an amazingly forgiving child and a loving child. Her smile captures you and reminds you how simple it is to achieve happiness in this "wonderful life."

This is not an easy journey by any means, but what meaningful journey is? There are challenges and mountains but they are matched with wonderful rewards. I have been given a true gift this Christmas. This gift - you cannot wrap, contain it in a box, no need to put a ribbon on it - it is simply the most beautiful blessing - to be home with my family, in our home, filling the house with love and laughter. It is the magic of Christmas that reminds us how truly valuable family and friends are in our lives. So as we set by our tree I will smile all the more for I know there are many, many bells ringing for all the angles in our lives... This journey has never been traveled alone. Our family and friends are our Angles, you have been tremendously supportive and we are grateful. It is your thoughts, care and prayers for our family that help provide us these blessings. Today I wish you all the same blessings of close family, good friends and joy this holiday season and all thru the New Year. And may I just say I marvel in how you so brilliantly hide your wings.

Merry Christmas!!!

We love our OWN bed!

Kyra has been hospitalized twice since our last post. The first time was due to a high temp, which lead us to the emergency room with a blood draw and a dreaded possible line infection. After three days in the hospital it was determined that the positive blood draw was a circumstance of cross contamination. The fever was due to an ear infection, which was easily treated during her stay. THANK GOODNESS! We are fortunate that Kyra has been able to avoid hospitalization this long (thanks to great nursing care at home!) Her absent immune system makes life difficult, especially with school age children and a teacher in the house. I can tell you I have a heightened awareness, I am quick to exit an area if I hear a sneeze or cough. I can sympathize with someone from a distance!

A week ago we spent time in the hospital because Kyra's broviac line had a tear. Her line was able to be repaired without surgery. Kyra's broviac was cut in two pieces (which made mom very nervous) the bad was disgarded and a new piece was threaded into her existing line and glued together. We had to wait 48hrs for the adhesive to dry and hope that she had an open line when we were able to access it again. Who knew you could glue together a broviac line?! I was skeptical to say the least - I was thinking "it's rubber, like trying to glue two rubber bands together." So we waited and prayed... please no infection

When you have a child with a compromised health condition, your life changes in more ways than you can imagine. Not only are you aware of the coughs around you... you learn more about how fragile life can be and how one thing can turn your world upside down in a single moment. Kyra's broviac line is truly a life line in every since of the word. The fact that she had a tear in the line with no immune system is dangerous. Kyra requires 20 hours of fluid a day thru her broviac to keep her nurished and hydrated - not to mention the medications running thru this line. If nurishment and hydration were not enough to age mom and dad then we add the fact that bacteria could have gained access due the tear in the line. But that is not enough... if the line is not open, Kyra would need a new line = surgery. Kyra will require long term IV support and we need to preserve her access points, surgery should be avoided at all costs.

Happily we can report, Kyra's line was open and we went home. We went home, feeling at least five years older, sooo tired and ready for our own bed. Kyra was just as happy to be home as she spread all out in her bed, rubbing the sheets!

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)